This year continues to fly by, and it’s hard to believe that, for those of us in the US, Thanksgiving is already upon us! From there, we slide into the rush of the various winter holidays, from now through New Year’s Day. They always seem to sneak up on us. While the holidays can be a time of joy, celebration, connection, and rest, for many they can also bring a lot of stress with travel, shopping, family and social commitments. For those with a breast cancer diagnosis, this can be quite daunting. For so many of us, the holidays are a time to reconnect with family and friends that we might not see as frequently during the rest of the year. While well-meaning, friends and families may question you about your treatment, or recovery process, please recognize that this can be emotionally draining. It’s your own choice as to how much you want to talk about it (or if you want to talk about it at all) and it’s important to set (and stick to) your own boundaries about how much you wish to share. This year, our collective holiday plans might look different than just a few short years ago. Some might be ready to go all out and “make up for lost time” getting back to the traditions and gatherings we had postponed in 2020. Others might still be wary of travel or large gatherings. Again, it’s important to set your own personal boundaries, and participate in what you feel most comfortable with. There’s no need to run yourself ragged, saying yes to every holiday party invitation. It’s fine to say, “I’d love to see you, but this is such a busy time of year. Let’s meet up in January.” Below we share several articles on how to take care of yourself during the holiday season so that it really can be “the most wonderful time of the year” for you. From SurvivingBreastCancer.org The Holidays and Breast Cancer “I think it all hit me when I was mid-air, on an airplane and heading south to visit my family for Thanksgiving. These feelings always come at the most inopportune time don’t they? I was doing what everyone usually does around Thanksgiving: -My bags were packed, -I was visiting family, -The holiday cheer was in the air, and 30,000 feet somewhere over New York, it hit me, ‘I had cancer,’ wait no, ‘I survived cancer!’ As if somehow, I forgot what a tumultuous year I had endured; my hair was growing back, my energy level was increasing, I was back to work etc. I was living the ‘normal life’. But out of the blue, mid-air, I started to panic. My mind started to race and all I could focus on was the millions of ‘what if’ questions." Read More . Delicious (and Nutritious) Ideas for Thanksgiving “Thanksgiving is about the traditions we’ve formed around the table. This year, I wanted to share some new ideas for how we can celebrate the holidays with a healthy spin as we continue to fuel our bodies and steel them against breast cancer!” Read More. Navigating Breast Cancer Around the Holidays 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. 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. 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). Read More. The Holidays and Metastatic Breast Cancer Abigail shares her experience of having MBC during the holidays. “Since 2017, when I was diagnosed with Stage IV Metastatic Breast Cancer (MBC), I’ve started to see holidays differently. I vividly recall the first celebrations following my diagnosis when I struggled with both wanting to go overboard in making memories and also wanting to simply withdraw from everything. The thought that this holiday, this birthday, this celebration, this time, this will be the last time, is always in the back of my mind. I still find myself staring at the people I love, during holidays or otherwise, trying to memorize their faces, fixing the memories in my brain so … what? So that I will remember after I die? How do you reconcile wanting to celebrate and be present with the very real fear that you will be erased, replaced, become irrelevant in the lives of those you care about the most? This anticipatory grief amongst the very real festivities of the holidays is mind boggling/numbing/blowing. ... Absent a crystal ball (and I need one of those), I think we have to make the best decisions with what we have to work with, right now. I think we have to focus on the knowns to make decisions, not make ourselves crazy with attempting to contemplate the unknowns. I think we have to be able to take responsibility for the things we can influence and just pitch the rest.” Read More. From Around The Web How to Cope with Breast Cancer During the Holidays (Breast Cancer Research Fund) “Communicate your needs and feelings. Be open about what you need and what you want the holiday experience to be. It is not helpful to hold in feelings of disappointment about a loved one’s behavior or a lack of verbal or emotional support. Instead, talk about your feelings in a non-defensive way using phrases like “I am feeling…,” “I would appreciate it if you could…,” or “When you do…, I feel….” No one can read your mind. Hoping that a spouse or friend will do something or behave a certain way because deep down you really want or need them to is a waste of precious energy. Communicating what you need is more efficient and more likely to yield the results you want. We each have our own way of coping and unique desires about how we would like to be supported. Communicating your needs is the only way friends and family will know how best to support you.” Read More. Breast Cancer, COVID, and the Holiday Season: Advice for Safely Connecting With Loved Ones (BreastCancer.org) “As you consider your holiday plans for this year, it’s important to understand your level of risk based on your age, health, and medical conditions. We know that the risk of severe illness if you get COVID-19 increases with age. The CDC also says that people who have certain medical conditions, including a current cancer diagnosis, may still be at risk for COVID-19 even if they are fully vaccinated and have received a booster. Likewise, people who are receiving breast cancer treatments that can weaken the immune system, such as chemotherapy, also may still be at risk for the virus. It is less clear whether a history of cancer increases your risk, but the CDC says it may. ... It’s a good idea to talk with your doctor about your level of COVID-19 risk and the precautions you should continue taking, especially if you plan to gather with friends and family for the holidays.” Read More. 7 Tips to Reduce Stress and Enjoy the Holidays after a Breast Cancer Diagnosis ( Healthline ) A breast cancer survivor shares her experience of being diagnosed right before the holiday season, the feeling of obligation to make sure her young son still was happy during this time, and the tips she’s learned after that first year. “I was depleted from several months of chemo and surgeries. I was receiving my last radiation treatment the day before Thanksgiving. The mental and physical exhaustion was real. I wrote out a list of all the holiday things I usually did, from shopping to hosting. Making a list helped me parse out what I really wanted to do, what I had to do, and what I considered too stressful. ... [Then] I did hardcore calendar planning. There were the things that had to happen (medical appointments and my son’s holiday recital, for example). And then there were the things I wanted to do that brought me joy. ... I took the less is more approach and simply pared down. When it came to attending events or hosting, I just did less of all of it. I realized many holiday expectations get wrapped up in the expectations of others. Those things didn’t need to be my expectations, so I let them go. I now feel good about curating a simple holiday season that fits my life as I go.” Read More. How to survive the holidays with cancer ( Fred Hutchinson Cancer Research Center ) “‘I feel pressure from others and from myself to make Christmas the best for my kids,’ said Brandie Langer, a 35-year-old breast cancer survivor and mother of three who went through mastectomy, chemo, radiation and reconstruction three years ago. ‘People ask me to do things or help out and I love helping, but there’s only so much energy to go around.’ Dr. Karen Syrjala , co-director of the Fred Hutchinson Cancer Research Center Survivorship Program, said one of the biggest challenges for cancer patients and survivors is to think in terms of how the holidays are now as opposed to how they used to be or “should be” in our minds. ‘It’s easy to get caught up in that “I’ve always done these things” mindset,’ she said. ‘But survivorship can be an opportunity to rethink your priorities and go forward rather than carrying around the baggage of expectation. It’s a chance to focus on the meaning of the holiday rather than the mass consumption.’” Read More.

It’s not exactly my fault that I’m overweight. Weight changes, more specifically, weight gain is a popular topic in any breast cancer circle. Look at online communities and discussion boards and you will see women diagnosed with breast cancer, inquiring about the side effects of breast cancer treatment, and whether that will cause weight gain . Even though some women lose weight while undergoing treatment, I want to share about breast cancer and weight gain. My Experience I am 5 years post diagnosis and have gone from a strong and healthy 140 lbs at the time of my diagnosis, to a soft and fluffy 179.4 lbs (I refuse to round up to 180). Sure, I am sitting more, working out less, and enjoying pizza and wine on Thursdays with our Thursday Night Thrivers gang, but I would suggest those are not the only factors contributing to my muffin top. In fact, a study found on PubMed and published in PLOS One claims that “patients who were non-obese at diagnosis showed weight gain, while those who were obese at diagnosis lost weight.” Yes, it is harder to work out when your body is constantly aching from tamoxifen or an aromatase inhibitor, or experiencing a slowing of your metabolism because you are thrown into premature menopause due to chemotherapy treatment or an ovarian suppressant. Whatever it may be, it starts to feel like the cards are stacked against you. I’ve certainly met many amazing women who have completely changed their lifestyles after a diagnosis and are cutting out sugars, refined and processed foods, and limiting (or cutting out completely) alcohol. I fall somewhere on the other side of this camp. That is to say, I eat relatively healthy, follow a pescatarian diet, enjoy my fair share of wine (I’m Italian, after all), and during the holidays, I certainly indulge in desserts. Does this make me a bad person? I don’t think so. Does this lifestyle equate to 40 lbs of weight gain? I don’t think that’s the case either. So What Gives? I’ve seen a few doctors lately- between my primary, oncology, and specialists for one thing or another- and they all seem to share similar sentiments: “Well, you are getting older,” they say (which no one ever wants to hear). “Being overweight can have other health implications, such as cardiovascular disease or diabetes.” (True statement, but it sounds a little threatening in my already highly vulnerable and emotional state.) “How often do you exercise?” (Gosh, it’s like going to the dentist when they ask you how often you floss! Avoiding eye contact, I mumble something, promising to do better and try harder.) After these awkward conversations where nothing seems to be going to my advantage, we start to discuss other medications that can help or prevent a whole slew of things such as: High blood pressure Lower cholesterol Support bone health Etc. So, I went home from yet another doctor’s appointment feeling like this cannot be my reality. Am I actually that unhealthy? Have I let myself go this badly? Sure, I can take some responsibility, but I wanted to do some research and spread the blame. The Research According to Foglietta et al., patients treated with aromatase inhibitors are more likely to develop hyperlipidemia, hypercholesterolemia (i.e, high cholesterol, which means your blood has too many fats in it), and hypertension (i.e., high blood pressure), all of which are recognized risk factors for heart disease. The enzyme lipoprotein lipase (LPL) is controlled by insulin. There is a relationship between estrogen and LPL and be advised that the estrogen hormone suppresses LPL. "If LPL is on a muscle cell, it pulls fat into the cell where it’s used for fuel. If LPL is on a fat cell, it pulls fat into the cell and makes it fatter. With less estrogen in the body, LPL can pull fat into fat cells and store it there.” ( Breastcancer.org ) Additionally, research published in the Journal of Clinical Oncology found that women treated with an aromatase inhibitor had about a 4.3 times higher risk of diabetes than women not treated with an aromatase inhibitor, which supports the research from Gibb et. al., in the Journal of Clinical Endocrinology & Metabolism who noted that women who received an AI for breast cancer had a greater percentage of body fat and insulin resistance, compared to those with no history of breast cancer. Ok, so I am not losing my mind! I am on an aromatase inhibitor which is causing me to increase body fat and may lead to insulin resistance, making me a candidate for diabetes, and of course without estrogen, my fat cells are only getting fatter! Sure there are steps I can take to counter the deleterious effects. In my opinion, my weight gain and potential other comorbidities, may not be entirely my fault! It’s not because I am simply getting older, or that I don’t workout enough. Conversations What we need to include in these conversations with our doctors are the following acknowledgements: Acknowledge that what I am going through is tough. Acknowledge that depleting estrogen will make it harder to lose weight. Acknowledge that many women who have been diagnosed with breast cancer gain weight and that I am not alone in this. Acknowledge that a cancer diagnosis isn’t my fault, and therefore, these side effects are not my fault either. After acknowledging that you understand how difficult this is, 1 year, 5 years, or 10+ years out from a cancer diagnosis, recognize that I am not choosing to be overweight. Offer to be my partner and support me in reducing the risk of developing long-term side effects from the current treatments I am on. We Are Not Alone In case you are one of the many women out there like me who is struggling with life after a breast cancer diagnosis, e.g., fatigue, weight gain, and subsequent other health issues that seem to just be piling on, I see you! I acknowledge that this is difficult, I know this isn’t your fault, and I know you are not alone because I am not alone either. +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ Foglietta J, Inno A, de Iuliis F, et al. Cardiotoxicity of Aromatase Inhibitors in Breast Cancer Patients. Clin Breast Cancer . 2017;17(1):11-17. doi:10.1016/j.clbc.2016.07.003 Gibb FW, Dixon JM, Clarke C, et al. Higher Insulin Resistance and Adiposity in Postmenopausal Women With Breast Cancer Treated With Aromatase Inhibitors. J Clin Endocrinol Metab . 2019;104(9):3670-3678. doi:10.1210/jc.2018-02339 Hamood R, Hamood H, Merhasin I, et al. Diabetes After Hormone Therapy in Breast Cancer Survivors: A Case-Cohort Study. J Clin Oncol . 2018;36(20):2061-2069. Koo HY, Seo YG, Cho MH, Kim MJ, Choi HC. Weight Change and Associated Factors in Long-Term Breast Cancer Survivors. PLoS One . 2016;11(7):e0159098. Published 2016 Jul 8. doi:10.1371/journal.pone.0159098 Why do some people with breast cancer gain weight? Breast Cancer.org, Accessed January 30, 2022. https://www.breastcancer.org/tips/nutrition/after_treat/lose_weight#:~:text=It's%20important%20to%20know%20that,cells%20and%20store%20it%20there .

Gloria is diagnosed with lobular breast cancer. She is originally from Trinidad and currently resides in Canada. She is a Reiki Master and believes in the power of healing, not just through the body's power of healing, but through the energy around us. Gloria shares with us her "aha" moments, the moments in which she feels enlightened and really understands the power of the universe in her own healing process and her own journey; she accomplishes this through deep reflection and introspection. She is able to go back not just years, but decades, to confront the trauma that was in her life and now enables her to live her best and fullest life. We talked about the power of therapeutic touch, the hand-heart connections, and her ultimately deciding to no longer take Letrozole and aromatase inhibitors. Laura Carfang: Your story begins many years before your actual diagnosis. Was your body trying to tell you something? Gloria: Yes. Which is very interesting. Even though I have followed up, and was the one to actually identify the so-called "pin head" of a lump, the thing with lobular breast cancer is that it tends to show smaller than it really is. So, even though I did have an ultrasound on it in December, 2018 it showed fine. My mammogram in July, 2019 showed nothing. But lobular cancer is like that, it does not present itself. Ultrasounds don't tend to pick it up because of the way it forms. It's coming from the lobes of the breast which are the milk producing glands, versus ductal which is the glands which are really the ducts that take the breast milk from the lobes to the nipple. Yeah, so only 10% as you said, Laura, I think it's just about 10% that experience lobular breast cancer. It also seems, based on the research that I've done, that it's mostly older women. I think that is because of having gone through menopause. It tends to be in a lot of cases, estrogen positive. I think that has to do with things like diet, exercise, stress and everything all coming together in our body to make that ideal suit, which it sounds like what occurs but for any kind of cancer to occur, right? Laura Carfang: That seems to be a theme I hear time and again. I don't know if it's just in North America, where we are just workaholics and we take on too much. We're overachievers, we're moms, we have careers, we're taking on co-curricular, extracurricular, volunteer opportunities, and we really fill our plate. I hear time and again, from others and myself , that I didn't realize how stressed out I was until cancer forced me to stop and literally cancel everything that I had going on for the next couple of months. Gloria: That’s so well said because it causes all of us with a breast cancer diagnosis, to stop and take an inventory of our whole life wheel; and look at all the responsibilities that we carry in that life wheel. For me, it's like so many various experiences, and I think one of the beautiful things about this healing journey through wellspring is really allowing us to look at ourselves, take the time as we go into meditation, to really ask ourselves the big question. Even just to recall things like your lifeline, and the various losses, whether that is the loss of a loved one through death, to the loss of a relationship through marriage or divorce, loss of jobs, and when you look at all those things, and then you add the complexity of the dynamic of just living, it produces an added stressor. I don't think we understand how stress affects us. The way I look at it now is I have converted my whole life to say I now occupy 1 to 10 and my to-do lists. Eating healthy is a change, exercising, going for walks in nature, breathing in the fresh air and being hugged by the forests. It's so wonderful to walk alongside a stream, and to take in the moment to observe the various animal life that present themselves to us. Some of my favorites are herons, turtles and all sorts of winged birds. Laura Carfang: I live in Boston, and I'm in this condensed city urban life, and I love going up to northern New Hampshire. We go to Maine and Vermont, to be in nature, by the ocean, by the water, the streams, the mountains. To me that is rejuvenating, and gives me the energy during the week, and then on weekends to go and escape in nature and then come back into the city dwelling and go through the hustle and bustle. It's so important to connect with our earth, to connect with nature, and whatever that is: whether it's the water, the mountains, the fresh air, to find that solitude and experience. Gloria: For me, if someone had asked back in December 2020, would I go walk by myself in nature on a daily basis, and I would say, most probably not. Now, I crave my daily walk by myself, because I use it as an opportunity to communicate with nature but also to communicate with myself. So I find [that] I love just walking and chanting in nature. Laura Carfang: Tell me a little bit about your life prior to your diagnosis. Gloria: You know, what can I say, I spent 40 odd years in the corporate world. Mostly in IT, software sales, some of the largest corporations you can think of like IBM, for instance, a very hectic fast pace. I think I just never really handled some of the losses that occurred in my life at an early age. So one that came up for me recently, as I went through this course, actually, earlier this year was the fact that I lost one of my very close brothers when I was only 15. He was just four years older than me, but very close, because I was in grade 12, actually, at the time, doing what we call, I'm originally from Trinidad in the Caribbean, we followed the British system of education. I was preparing for all levels, and I was in the science stream and my brother would be the one to explain physics, math and chemistry. Unfortunately, he was in a motorbike accident, and passed on. And I don't think I ever understood what it meant to grieve. I really don't think my peers in high school even knew that I lost a brother, because we came from different parts of the island. So I think other than maybe four or five girls from the village where I was born and grew up and attended that high school. Funny enough, it was run by Canadian missionaries. Which is so interesting, right? But not being able to really grieve that loss and then lose my mom, I think she just barely stayed alive until I was 24. So nine years later, losing her, you pretty much have to wake up and be an adult very quickly. These things affect us in many, many ways. Until we have the opportunity to take the time, I think to really look and ask, how did this affect me? And have I grieved? Did I really go through the process of grieving? Laura Carfang: It's so important to allow yourself that time, and know that there's not really an end either. I believe that grieving is a process. But I understand also, that you enjoy spending a lot of time out in nature. Gloria: We live in the country. There are lovely, lovely trails. So I was walking one day and saw this beautiful red cardinal and I didn't know what I was feeling or why. But I remember learning somewhere along my path that a red cardinal is normally like a loved one just visiting. And I got this flash of my brother. I found myself just in total tears. These are the kinds of experiences - I think until we give ourselves the time and to really be honest with, the way I look at it Laura, it's me, myself and I, nobody else. Right? All three of us call it even if you think of it as the body, mind, and spirit, because I do believe the things that affect us on the physical level have an impact on the emotional, the mental, and the spiritual. Laura Carfang: I completely agree. You've been involved in a lot of healing, personal healing, going through workshops, various modules, can you tell me about the healing process for you and how you're doing? Not just with all the losses you just described, but also with your breast cancer diagnosis? Gloria: For me as I go through my healing journey, there is one that really sticks out for me, and that is the ---. Growing up, we always heard and it's somewhere in the back of my head that says: "blood is thicker than water". For me, that has not been my personal experience with my family of origin, especially my siblings. It has now allowed me to sit with that and ask myself, what do I believe family to be? And to me, family could be anyone. It's all of humanity. That is one "aha" moment. The other is: "what would my choice be?" If something should occur with any one of my siblings. I had to really sit with that for some time, in my case, I had to let go of that disappointment, let go of the expectation, and really ask myself who am I? Laura Carfang: Which is scary. It's scary to confront who you are, and really look at yourself in the mirror and do some of that deep healing internally that will bubble up emotions that you might not be expecting to, to have bubbled up. Gloria: Absolutely. I think every day, if we spend time with ourselves just in the silence in those moments, we learn more about ourselves. Then we can make conscious informed choices as to who we want to be? In that process, I look at myself and I say, "Well, I am loving and kind and compassionate". I'm able to discern, is something from the ego, is it from source? Therefore, I can make informed choices. So my informed choice around this myth is the change to reframe or redefine what family is to me. In addition to that, to say, what is the choice I'm going to make? Should some of my siblings have, maybe a health issue or something like that. And I've decided that this is who I am. So I'll respond the same way that I always did. But with boundaries. Laura Carfang: Have you had other "aha" moments as you're experiencing the journey of healing? Gloria: Another "aha" moment for me in this process is one reframing the thinking but also choosing what are healthy boundaries for me. Case in point was 2007. I think it was when my dad had a stroke. For me, I felt the connection. This occurred at the airport in Trinidad. Both my son and I went down to Trinidad, I had just changed jobs and I decided I had about a week to spend in Trinidad, but I needed to bring my dad back up to Canada. We had to literally lift him on the airplane and the 12 years that I had with him. After that, he was in the hospital here in Canada for 46 days. Because his stroke affected his left side, he couldn't eat, he couldn't speak. He had no movement, the phenomenal health care team that was involved in his healing really made a difference, and of course, his will and his desire to live. Those are lessons for me that now I could recall and implement in my own healing. It's interesting that the last two years as you read from my story, we lost him just after his 94th birthday. But that was another experience. He literally taught me conscious dying. So I had the opportunity to spend four days with him at our local hospice. In those four days, I could see the symbolism of everything from the choice of his golf shirts that the nurses chose to put on, to his last rites, to his communication, to learning and therapeutic touch, which was something I never even heard about until hospice. Even though I was trained, and I am trained in Reiki. So even as a Reiki Master, I was never exposed to therapeutic touch. As a volunteer, she taught me what they call the hand to heart connection. When someone is in the process of dying. Laura Carfang: Can you explain to me what therapeutic touch is, and this relationship between hand and heart? Gloria: Therapeutic touch actually was developed by the head of nursing. I think it's New York State of New York State and it is evidence based research. So a lot of the nursing schools actually teach therapeutic touch. And the way I would explain therapeutic touch is recognizing that we're all energy. So I think once we can get our heads around the fact that we're all energy, whether it's animate or inanimate, there are many levels to our energetic field. So there is the physical body, there is the emotional, the mental and the spiritual. Some people are able to see or feel those fields. It's really about bringing with intention. It's going into that heart space, and holding that intention of opening an energetic portal for someone who is dealing with any kind of imbalance in the energy field, to bring balance, order and harmony back to their energy field. But it's up to the person that is the recipient, to then take that opening or that portal, and make that choice. So I think, if it's something that I have learned through this whole process, choosing wisely, and being empowered in your choice. So, that internal guidance is very much present. Laura Carfang: Almost, allowing yourself to be open to the signs and energy that the universe is giving you. As you were mentioning, like with your experience walking and seeing the red cardinal, it's easy to be looking down at your phone or looking at something else. Or, talking with a friend and not really taking in your surroundings. So it's really allowing yourself to be open to these signs. And then, interpreting them and having that connection. You know, as I'm learning about myself, energy healing, and practicing different techniques in terms of opening up chakras and just being more attuned with my own healing journey. I was pouring coffee this morning, and sometimes like when you pour the coffee, they make designs like in your coffee? And so, I got a heart! Gloria: That's funny, I knew it'd be one. Laura Carfang: Oh, my gosh, yes, that's exactly what happened. And I'm thinking, Okay, today is going to be a day where I'm going to make connections. I'm going to move forward with compassion and empathy and love. It's just one of those little things where I could have just poured the coffee and drank the cup, etc. but really taking that moment to pause and be present, as you were mentioning. Gloria: Isn't that really? It's like coming into a place of self-love and self-compassion. That has really nothing to do with anything else. I know in some cultures, death is spoken of. People have seen a dead body. I think in North America, we make it so clinical. Maybe other than the indigenous peoples of North America, most people go through life and may have never had that experience. To be able to sit with someone, as I was fortunate to sit with my dad for four days, and be like his death doula really is what it is. And to be aware, I found that because I had that opportunity. The grieving was a totally different process. Laura Carfang: Tell me about that. How would you describe the differences? Gloria: I have no unfinished business. Whatever I needed to say to him, just to be with him. So I think that is the biggest gift, not having any unfinished business with the person. Laura Carfang: That’s beautiful. I was speaking with another dear friend who was on the podcast, and she lost her husband to a terminal illness. She described those last days as probably one of the most intimate moments of their relationship and how beautiful that was to be able to experience being with your loved one as they're passing, actively passing. Gloria: You talked about earlier, the hand to heart connection. So, the volunteer at hospice taught me it's like, you rest their hand, right? So it's their heart, so it's left to left and you form that infinity symbol. When you do that, you form that infinite heart connection. And, you just hold it as long as you so choose. And so the moment she told us that, whether it was myself, or my son, or my partner sitting with my dad; we tried to do it as much as we could at different times during those four days. Gloria: I think it was a very peaceful process for him. It wasn't agitated, there wasn't any major gasping, or gnashing of teeth, or anything like that. It was just so beautiful, it's almost because I was there with him for those four days, 24 hours in his room that you go through those moments where you can see the process. So you know that hearing is most probably one of the last things to go. So you always want to whisper and let them know, it's okay. My dad was Hindu, so he practiced Hinduism. And we had his last rites the Monday before he transitioned. It's almost as though, everything in the universe has a specific rhythm, or a divine matrix, call it whatever you will, because we had that for him that Monday and he transitioned, exactly three days later. It was halfway between the time, we did his last rites from 6:30 to 7, and he transitioned 6:45, three days later. Gloria: There were things like a robin sitting on the roof, across the laneway that I could see from his room. And my Dad, though interestingly enough, this year will be 40 years since my mom has transitioned. My parents would come up from Trinidad to Canada, almost every year because all my siblings are scattered all over North America. My mom 40 years ago said no, she wasn't coming. My dad was in the Rockies. One of my brothers lives in Calgary, and he was only there for three days and had to turn around to come back to Trinidad to attend her funeral. Do you know, two years ago, after we celebrated his 94th birthday, my partner and I were in the Rockies on vacation. When he fell ill, we returned halfway from our trip. Where was I? So is this something that was meant to be? It's such a bigger question, I have no doubt in my mind that my mom was there to greet him and help him along his path. Laura Carfang: How has this healing that we're describing and talking about today, and the work that you're doing with wellsprings in terms of the courses that you're taking? How has that helped you with your own personal journey with breast cancer? Gloria: I feel like I'm truly living my best life. Every single day. When I say my best live every single day, it's a sense of contentment. It's a sense of being comfortable with me. It's a sense of relieving expectations of myself and anyone else. Laura Carfang: On social media, we see a lot of these doctored photos, everyone forcing the smile, everyone pretending that life is perfect, and that they're living their best life. They have the vacations, and you see on social media that what they want to choose to present, versus what I hear you describing is, I would say, a tune to understanding what it means to be at peace with yourself. Gloria: If I can just share with everybody on this journey to sit in silence and really discern, because we all have that ability to discern, is this something, whether it's a decision around surgery, or diet or medication to the other extreme, which could be, hands on healing. Laura Carfang: Exactly. Gloria: I think both spectrums play such an important role in our lives. It's not one path only. But it's really recognizing the whole person and really looking at ourselves on all levels; so physical, emotional, mental, and spiritual. But also looking at it from a full life wheel. Because like you and I were talking about, we are so busy, you asked me to tell you a little bit about myself, you know, being a full time professional, having kids and now having grandkids and going through a separation and divorce. That whole journey by itself requires a total introspection because it also has beliefs and limiting beliefs. Right? Because somewhere along the line depending on our religion, we may have a belief that we only have one partner and that may not necessarily be our belief. Laura Carfang: How did you decide to no longer take Letrozole, one of the aromatase inhibitors because of one of the terrible side effects? Gloria: I think for me as I go into my silence and my meditation on a daily basis, is something, because the breast cancer tumor was grade one, but stage two, so the difference is stages based on size, but grade is based on the percentage of abnormal cells within the tumor. So grade one tumor in my case specifically, was less than 10%. So, lobular breast cancer tends to be slow growing and I had gone through, very fortunate with my medical team and a fantastic surgeon who requested all the tests to ascertain prior to surgery or presenting a choice around surgery to me as to was this anywhere else in my body. So knowing that, and being an active participant and reading and researching once the lumpectomy occurred, and I got the pathology of the lumpectomy that indicated it was stage two grade one, and then estrogen progesterone 90 to 100% return. Gloria: But going back for my CT scan, I observed that there were indications of a non-alcoholic fatty liver disease so then my doctor had a huge series of blood work around the progression or non-progression of a non-alcoholic fatty liver. And so knowing what I could do to address that, because I think for me, that's my root cause of why this imbalance occurred. That combined with stress and I think emotion, probably two of the main factors. So not eating healthy, not exercising, being postmenopausal, we have to take care of ourselves in a totally different way than when we produce enough estrogen. Gloria: The thing with estrogen and being postmenopausal, which is something that I learned as well, is that it doesn't mean that we're not producing estrogen. It means that in my case, which is why I think the stress because the adrenals produce cortisol that gets converted to estrogen. If I don't address the non-alcoholic fatty liver, which takes about three years, I am thankful and grateful that it's the one organ that, if you take care of it, can rejuvenate. Having the test done that indicates there isn't any probability of it progressing to be cirrhosis of the liver, anything like that. I've chosen to change the way I eat, eat more vegetables, and do intermittent fasting. So I have, maybe 80% of my plate is vegetables and 20% protein and just exercise and just even walk and be more active. That combined with the fact that my medical oncologist did the oncotype tests in under two months. So as you most probably aware, the only time they can do an oncotype test is supposedly it's biopsy or surgery, in this case, a lumpectomy where they can look at the tumor and give some indicators as to what's the probability of recurrence. So again, in my case, understanding the onco scores, mine was just 11, which meant for them to even consider recommended chemo based on age, I would have had to have a score of over 26. Laura Carfang: Wow, that is low. Gloria: So that was one, the oncotype. The onco score also gives an indicator, because there's another part of it that shows if you went under an aromatase inhibitor for five years, how does that affect your longevity or non-recurrence of breast cancer? Again, in my case, it was taking me from the average of, I think it's now one in eight I believe. A woman can get breast cancer to one in 33. Everybody's so unique. And so my body, I listen to my body. My body was saying, just after two months of taking this little tiny, tiny pill, it's like, if it fell on the floor, you can't even find it. Laura Carfang: I'm on Letrozole, too, so I completely understand. Gloria: I had all three side effects. I went through menopause, Laura without any night sweats, hot flashes, none of those things and something triggered in my body with Letrozole that I have night sweats. I had hot flashes. The worst was the joint pain in my hands. To the point where I would get up at the wee hours of the morning. And I can't go to sleep because if I lie down, it's worse. So I would try to move and slowly it would ease but it just felt, I don't know, like I imagine how an arthritic set of fingers feel. And so after the first month, I thought "Okay Gloria try for a month", I called my medical oncologist, being the wonderful person that he is, suggested instead of taking it at night, let's try it in the morning. Laura Carfang: Which is so funny because I hear a lot of women say, I take it at night so I can sleep through the symptoms, but in your case, it was waking you up. That was that bad. Gloria: It was waking me up in my REM sleep from two to seven. That's the time when I need my baby sleep. I need to rest like a baby, right? Laura Carfang: So maybe taking it in the morning when you're active and walking and moving would mitigate some of the symptoms. Gloria: It did not, it was like clockwork, Laura. The second month was the same thing. So then he said, why don't we just stop after two months, see when the side effects are gone. And then we would try the next aromatase inhibitor. In my case, he suggested Exemestane. Because Letrozole and Anastrozole are built the same way. So try Exemestane. Well, I'm still having night sweats and hot flashes. And I have made enough changes that I walk a path of well-being. I know that where my head and my heart are connected with such intense passion, that I know I'm healthy. Laura Carfang: So you chose to forego the aromatase inhibitors, you are trusting your intuition and your body. And like you were saying, and how we discussed for this podcast, all of the amazing changes that you've made with exercise and diet, and then just being attuned to healing and Reiki and the therapeutic touch. So you, it's beautiful. I'm so excited for you. I felt like this is one of many conversations and felt like we're just scratching the surface on a number of topics that I would love to invite you back for future conversations. And then I want to ask in terms of closing words and remarks. Is there anything that you would like to highlight for our listeners? Any words of encouragement or advice to those listening? Gloria: Oh, absolutely, I think what I would suggest to all of us is to be an active participant in our well-being. The second is do our research, be informed. Third is trust; that instinct, gut instinct, internal guidance. Whether we do that through prayer, through meditation, or through walking in nature; I think they all have the same effect. And know that healing is possible. We all have all the tools, including allopathic medicine, don't get me wrong, but that combined with a holistic approach, to heal ourselves, I do believe we are multidimensional beings of light, we're just energy. As we walk that path of really understanding who we are, it's looking at the whole person. And for me to be able to go and grieve losses that occurred 40 something years ago, it's just a yes and it just tells you where these things can reside in our being-ness that we haven't uncovered through our own work, through our own introspection to look at ourselves. It's a choice because we can choose differently, we can pretend that it's not part of who we are. Or we can say, no, this is something that is really important. Get into that place of self-love and self-compassion because I really do believe once we are able to truly get to that place, that we are then being the best that we can be in the moment. Laura Carfang: I love that. Thank you, Gloria. Thank you for taking the time to share your story with us.

By Tara Coyote Life with cancer is metaphorically like dancing on a razor’s edge. The reality of one’s life possibly ending before you are ready to leave this precious planet, is a daily reality. From my own personal experience, I find it’s important to actively choose life, yet also be aware of the impermanence of death. I have been journeying with late stage breast cancer for 5.5 years. I was first diagnosed with hormone driven breast cancer in September of 2016. In the fall of 2018, it spread to my lungs, liver, bones and adrenal gland. By the winter of 2019, I was referred to hospice. I miraculously made it through the gauntlet of heavy-duty cancer treatment, paired with the support of natural medicine. To this day, I continue to have stable scans, with the tumors continuing to shrink throughout my body and clean blood tests. I am incredibly grateful to be alive! One of my coping techniques is to visualize myself continually healing. I never see myself as ‘sick’. In my mind, I am healthy, even though cancer is a daily reality that I am journeying with. Cancer is a part of my story, but it is not my entire story. This is not an easy process, but over time I have trained my mind to adapt to this way of thinking. It requires constant vigilance to keep my mind clear from these disturbing thoughts that can creep in: “How long do I have to live?” “Is the cancer growing?” “Will it come back?” “Will I die soon?” Walking on the razor's edge of my mind means: One part of me is constantly aware of my own mortality. I don’t know how much time I have left on earth and I am okay with this reality. I acknowledge and accept the reality of death. On the other side, I don’t feed into the fear of living a shorter life than I would prefer. I never look at arbitrary statistics of life expectancy with stage 4 cancer. I refuse to put myself in a limited box. I am so much more than a statistic. I believe in miracles; therefore, my body is a living miracle! It takes tremendous mental acuity to keep the mind clear once you hear the dreaded words, “You have cancer.” When I was first diagnosed in my mid-forties, I was shocked with the realization of my own mortality. I had always assumed I would live to a ripe old age. The fateful diagnosis was a gift to make me realize that my time on Earth might be much more limited than I had naively assumed. Living to the age of 50 seemed like a worthy goal. Over time, I learned to identify fear as: F - False E - Evidence A - Appearing R - Real Additionally, I did some deep introspection with my thoughts doing ‘The Work of Byron Katie’. (Byron Katie created a modality of healing through asking four questions to introspect the validity of a particular thought.) I read books and did meditations by Joe Dispenza, the best-selling author of ‘You are the Placebo’ and teacher, who teaches about the power of the mind. I learned that I could create my reality with every thought that crept through my mind. I realized that it was my decision to manifest my own personal story . The mind is so much more powerful than we give it credit for. Every moment of your existence is a choice. You can choose to be depressed because you are walking with a serious diagnosis or you can see it as a brilliant blessing to truly wake up to the precious beauty of life! It is you and you alone that decides to thrive with your ‘health opportunity’ or merely survive. It is not always an easy process, but it is tremendously empowering to embody this manner of thinking. It is quite common when receiving a serious cancer diagnosis to become impeccably aware of what food you eat. Those diagnosed with cancer often change their diet rather drastically in an effort to heal. How much effort is put into considering what thoughts are rolling through the subconscious and conscious mind? I believe that what diet you choose to feed your mind is equally as important, or possibly more important, than the diet you consume. The extraordinary life work of Dr. Emoto is documented in the New York Times Bestseller, ‘The Hidden Messages of Water’. In his book, Dr. Emoto demonstrates how water exposed to loving, benevolent, and compassionate human intention results in aesthetically pleasing physical molecular formations in the water. Water exposed to fearful and discordant human intentions results in disconnected, disfigured, and “unpleasant” physical molecular formations. He documented this through Magnetic Resonance Analysis technology and high-speed photographs. If the words and thoughts that come out of us have this effect on water crystals, it’s amazing to think of what kind of effect they have on the people and events that come into our lives. I am grateful for the cancer diagnosis that woke me up to the reality of how blessed I am to inhabit a human body. Without this brisk brush with death, I would not fully comprehend how magnificent my life is. In conclusion, I would like to remind you how very powerful and strong you are. Walking with cancer is not an easy path, but it certainly is a marvelous growth opportunity. I encourage you to explore the realm of your thoughts and see what infinite possibilities of transformation await you!

Transcribed by Agnieszka Kowalczyk Laura (addressing Martin Naley): It’s my pleasure today to be speaking with Martin Naley from Ciitizen who is the program lead for clinical trials. You have an amazing background, having worked for the Biden Cancer Institute before and having had over a decade of experience working in clinical trials. It’s an honor to be speaking with you. Thank you for taking the time to join us today. Martin Naley: It's a privilege to be here. Laura Carfang: We get questions all the time about clinical trials. What is it, how do I get involved etc. It can be quite an overwhelming process. But it doesn’t have to be. How would you define a clinical trial? What is it that the patients need to know? Martin Naley: Clinical trials are something that every patient should be thinking about at every step of their care. The nature of cancer is that it's full of big decision moments and when you hit one of those decision moments, you need to consider what the next line of therapy is to go for.You have to be thinking almost like a chess game, always two steps ahead. What are you qualified for today? What could you be qualified for tomorrow? What decisions can you make today to get yourself ready? Often people think about clinical trials as one of the last things you'd think about in your care, I like to think about them as the first thing you ought to be thinking about in your care. Trials for brand new drugs are typically ones where drugs are introduced at the end of care. But trials move forward in the care journey from the very end, to second line, to first line, all the way to the beginning of cancer, and so some of these new treatments become available at the beginning stages of your cancer. Laura Carfang: That is a really good point. I often think we have this misconception that clinical trials are only an option when all of the other options have been exhausted. But what I'm hearing is that even in the earliest stages, these are initial conversations you can start having with your oncologist and with your medical care team about what options are available and whether or not, depending on the phase and stage that you're in, if you're eligible for any of them, Am I understanding that correctly? Martin Naley: Yes. Furthermore, if you don't consider a trial today, you might actually take on another line of care that prevents you from getting that trial tomorrow. You need to be able to think about those trials as equal to standard of care options. They are often considered therapeutic options today. That's really a change in the medical mindset, it's not just research, it's an opportunity to get the best therapy. Wherever you are in your care, when you hit one of those decision moments, that is when you ought to be talking with your oncologist and exploring every opportunity. Laura Carfang: That's a really good point. Speaking of clinical trial eligibility, would being on a specific line of treatment preclude you from being eligible for other treatments later down the line? Or even the reciprocal? If you started off with a Taxol, or an AC treatment, would that preclude you from participating in a clinical trial? How do we find out that information and with whom should we be speaking to about it? Martin Naley : The information is available in a public place, it's just impossible to read it there. It's unfortunate. So there is a place called clinicaltrials.gov. All clinical trial sponsors are required to register their trials there, you can think of it like the trials phonebook. But it's written in a language that nobody understands. Even oncologists have difficulty understanding it. I often say it's written as riddles. Not only are they riddles, but they're riddles in a foreign language, not only do they lose their meaning but they even lose their humor. The challenge, I think, and this is what I've been working out for the last decade, is to bridge a language gap between what's found in a patient's medical records, the language that's spoken in, which is medical terminology, and clinical trials selection criteria, which is a completely different terminology. For instance, in your Taxol question, there are many different drugs that have their own names, Paclitaxel, Abraxane for example, that are all taxanes. A clinical trial may require that a patient has had a certain number of taxane treatments so getting that round of the next treatment of Taxol could be the thing that qualifies you for a certain trial. At the same time, if you've already had a line of taxane therapy, and a trial has a limit of patients who have only had one before, then you could actually exclude yourself from that trial by accident. That’s why it's important to have the list of trials that are either available to you now or could be available to you soon so you can start making those decisions together with your oncologist. It's almost impossible to do that research on your own. That’s the work I've been doing, essentially delivering reports, lists of trials to patients that they're eligible for today, or that they have a qualification path to get to for tomorrow. Laura Carfang: It’s getting as much information as you can upfront so that you can make informed decisions about your overall lifecycle treatment plan, not just in the immediate. I know so many of us who are listening and going through this, we are forced in a very short period of time to make these critical decisions, because the cancer is aggressive or growing, or we got diagnosed at that particular stage, that we don't have a lot of time necessarily to do the investigative research or even to know that this is an option for us. I really appreciate you bringing that to light. Martin Naley: These decision moments are “oh my gosh” moments where everything is brought into focus in that moment. Unfortunately, the research that you have to do to find your treatment options, takes a bit of time. Having the luxury of a report that gives you that information can really help in those discussions with your doctor. What you don't want to have happen is that the information gets to you after you've had the interaction with your doctor and made a decision. It's just too late. It’s important to make that request. Get your trial options report as soon as you can. Laura Carfang: Can you tell us a little bit more about your background? And what is a trial options report? Martin Naley: I'm a biologist with a business background. I worked in a company that helps to bring genomics into the world, a company called Invitrogen which became Life Technologies. Working with that company, I had a chance to develop and introduce some of the first genomic sequencing tests for cancer. I was really excited about them. I definitely got some religion about that technology. I was disappointed and impatient about the uptake of that technology in the world. So I started a company called Cure Forward, that company doesn't exist today. What it did was help patients get genomic sequencing tests and gather their health information, and then use that information to get into clinical trials. In doing so, I learned this language gap and I also learned what investigators, the people who run trials, need to see for a patient in order to make that patient qualify for the trial. I learned about how difficult that is. There are a lot of places out there where you can get superficial clinical trial matching. Sometimes those places ask you a few questions online, what your cancer type is, and so on. Some of the questions, if they wanted to go deeper, get too hard to answer for a patient. So they don't. You wind up with superficial matches. I decided to make something that would be a lot more rigorous. The risk of being almost impenetrable to most users is actually making it understandable, this being a set of matches based on every aspect of your medical records, that would qualify you for the selection criteria in clinical trials. I started doing that when I was at Cure Forward and from there, I had a chance to work with a number of different companies and organizations like the Biden Cancer Initiative to solve this problem, and unfortunately, it just hasn't been solved yet. I was really lucky to meet the founder of Ciitizen who was bold enough to take a chance on this project. What's really distinctive about this project is that I made no compromises. The world is full of compromises on clinical trial matching and an example of a compromise is you might go to an institution that has a wonderful set of trials available but it's never going to be all the trials. Even if you're at an elite academic medical center in one of the cities with the best doctors, there could be another trial down the road that you don't know about. The compromise could be the breadth of trials that's available to you, or it could be the depth of matching. I decided to take neither of those compromises. This gave me a chance to do that. What we do through this software is take all of your medical record information and compare it to all the clinical trials and deliver you a report. It's a list grouped by the degree of match strength, and the location matches to your travel preferences. Within that report you see, first the highest level matches within your location choices and then last, you see the partial matches outside of your location choices, and everything in between. And it's available now. It's my dream that I've worked on for a decade now and I got a chance to make it with a company that really cares about making this possible for patients. Laura Carfang: Congratulations! I'm just so excited to hear about all of this coming together and how you are not making any compromises to create the best tool possible to help the patient find that match and to talk about the role that technology plays in our healthcare and our health system. Martin Naley: In technology there’s an acronym that everybody uses called MVP. That's the minimum viable product. What's the least you can get away with and get on the market? Well, unfortunately, in clinical trial matching the MVP is everything. And that's just what we had to do. If you did anything else, you're delivering superficial matching and the consequence of that is a patient getting hopeful, and organizing their care around something that doesn't exist. Then the investigator has to give that patient bad news, that they're not actually eligible for the trial. It's terrible for everyone, bad for the patient and for the investigator. The world gets jaded. Then everybody stops, the doctor stops looking for trials, the patient stops looking for trials, the investigator stops taking the referrals, they just don't pick up the phone. And, and so the MVP is you have to do it perfectly to overcome this fatigue that the world feels so that people can actually believe again. That's what we're after. Laura Carfang: Before I bring our panelists on to join our conversation, one last terminology question I have for you. So as people are getting their matching based on their medical records, and they're getting this report of what trials they're eligible for, does your report also break it down based on Phase 1, Phase 2, or Phase 3 trials? And then specifically, how are those trials differentiated? Can you explain a little bit what the difference is between Phase 1, 2, and 3? Martin Naley: For the first question, the answer is yes. Within each of those four trial groupings that match strength and location, the support order is by phase descending, so you see Phase 3 trials first, down to Phase 2, and then 1. The reason that we show them all that way is phase three isn't necessarily better. I'm sure those drugs or treatments are a little bit more validated but there are advantages to phase one trials, too. There's no control arm. Some patients prefer that. They want assured access to a new thing, even if it's a less proven thing. We don't have an opinion about what's better or worse so we show them all and give people a chance. Now, I started to answer the second half of your question, which is: What is Phase 1, 2, or 3? Phase 1 trials are where drugs or other therapies are first introduced and tested for safety. In the Phase 1 trial, people are trying to figure out what's the right dose, what's the safe dose, and they start getting an initial read of efficacy. However, the trials aren't designed for efficacy testing, they're designed for safety testing. Phase 2 is more efficacy based testing. It's a broader group of patients. It's expanding that dose to more people to see how it affects cancer. When they start getting some data in Phase 2 that indicates the drug is really working they go into what's called a registration trial. Phase 3 trials are where you're trying to get the drug FDA approved. Those are much bigger trials. It's much more defined patient cohorts, and the outcomes are much more statistically measured. Laura Carfang: Thank you for defining all of that for us. We have some terminology to use and describe. One term you mentioned was the control arm. In these Phase 1 trials, if I am understanding it correctly, everyone who participates in that trial is a recipient of that drug or therapy, there is no placebo or alternative arm. Martin Naley: That is true. But I want to temper that. In Phase 3, there's no placebo. It's the best standard of care and it's really important to know that. It would be unethical to put a cancer patient on something that you know won't help them. These trials are absolutely done for patients. They want to help patients while they're advancing these new treatments. That’s why I've always believed, and I learned this from a mentor, that research medicine is the best medicine because there's a chance you're going to get the new thing but even if you don't get the new thing, you're still going to get the best care. That’s why people who go on clinical trials live longer. There's great research out there that shows one year survival and five year survival statistically improves just by getting into a trial, not necessarily even getting the new new thing. Laura Carfang: Understood. Thank you, I would like to welcome Abigail, Alyson and Sheila to the conversation. All three of you have amazing beautiful stories. All of you are living with metastatic breast cancer. You've come to it in different phases, which I think is really great. One of our Surviving Breast Cancer members started off being an ER positive breast cancer patient and then ended up with triple negative breast cancer. She was shocked to see that the subtypes can actually change and wanted to know if that was even possible. So I'm looking at you, Alyson, who I know who has had that exact experience where you were diagnosed in around 2007, with ER positive breast cancer and had a phenomenal response to all of your therapies and then 10 years later had a recurrence where it came back, metastatic and also triple negative, correct? Alyson: Yes. That is what happened to me. I was completely floored. I didn't know that could happen. It was extra upsetting at the time. It was bad enough. That's been my situation. I've been living with metastatic triple negative now for almost two and a half years. I've had my ups and downs. I think we all have. I've been on many lines of therapy. In fact, I lost count, I'd have to go back and see, probably five or six. I've been on some of the more novel therapies. I've been on the more traditional therapies. But overall, I'm doing pretty well. Luckily, nothing's in my organs. That's really lucky. I've had a hell of a time with my neck. I don't think I'll ever think of the expression “pain in the neck” in the same way. I don't think I'll ever call anyone that. That's been where my cancer likes to hang out and cause me trouble. As far as clinical trials, I personally haven't had the experience of participating in one, but, of course, I realize the importance and I've been in consideration for one. I went pretty far down the line. It was pretty much the same story Martin was alluding to where I was out to dinner with some friends and I thought I qualified and then I got the call saying I didn't. It was based on medical minutia even my doctor thought was minutia. But I'm hopeful that I will find opportunities in the future clinical trials. Laura Carfang: I can see how that would be very challenging news to receive, let alone a diagnosis and a recurrence and thinking you're so close to being a beneficiary of being on a trial to realize that there's small little things that still can disqualify us. I'm sorry that you had to go through that experience. And I will circle back with you because I know you did have experiences trying to work through collecting all of your medical records and all of your data, which is such an important piece. But I also want to welcome Sheila who is joining us today as well. It's lovely to have you on our live stream. You have a wonderful story as well. And congratulations! I want to say thank you for your service of 25 years in the Air Force. That's incredible. You discovered your lump when you were in the Air Force, correct? Sheila: Yes, I was active duty in the military back in 2009. Quick backstory: my mom died of metastatic breast cancer in 2004. Five years later, I got it. I was diagnosed metastatic. I sneezed and didn't know what it was. It was breast cancer that had spread to my liver and ribs. I've been living with it for 11 years. Laura Carfang: 11 years. That's phenomenal. Can you tell me a little bit about the symptoms? How did you know? Sheila: I thought it was like a weird feeling, it burned. I remember thinking, that's weird. I thought it was my breast. I had had my mammogram and had been getting mammograms since I was 37 because my mom died when I was 37. I sneezed again, like a week later, and I felt it again. I went to my military doctor, and I said every time I sneeze, it burns. So they did a mammogram. He brought me in, and he showed me, saying, “see that white stuff on your breast”, he said, “that's breast cancer, what you were feeling was the cancer pressing on to your ribs”. I'm 43 years old. Having fun enjoying life. Who would have thought 43 years old? I didn't even know black women could get breast cancer. You look at commercials, and back then you didn't see black women with breast cancer. The only person I knew was my mom. I had to retire from the military and take care of myself. Laura Carfang: I appreciate you sharing your story too. I'd like to turn to Abigail now to share a little bit about her story. Every time I listen to it, or read about it, I'm always discovering something new. What I want to highlight about your story is that you were diagnosed with stage two breast cancer, and went through all of the typical treatments of surgery and chemotherapy, and within a short period of time discovered that it was metastatic and had spread to your bones. The unique piece about this is that although your lymph nodes came back, no negative, it actually traveled through the blood to your bones. Abigail: It was incredibly shocking. It was actually a medical mistake, when I went for my first dose of chemo, the nurse checked the box to check my tumor markers. In the middle of chemo thinking I was stage 2 I found out that I had actually been stage 4 from the beginning and the tumors in my legs were actually substantially larger than the tumors in my breast had ever been. That was why I was limping and I was one bad step away from both of my femurs shattering. It was a huge shock and rushed into emergency surgery within days of discovering that I was stage four. Now I have lots of metal in my body, I have rods in both femurs. I’m still waiting for the superpowers from all the radiation, you know, there has to be some silver linings to all of this stuff. Laura Carfang: One question that I want to follow up on is, we've been talking a lot about clinical trials and Martin gave us a great overview of matching and how to find them in this amazing report but I wanted to ask, and this is to anyone, how did you first decide that this data piece was really important, that we needed to have a centralized place for medical records, that you could feel empowered to then send it out to places, to medical fields, and to doctors, and then that you wanted to start investigating whether you got accepted onto a clinical trial or not, that clinical trials were something on the horizon for you? Abigail: I could take the first piece. I moved in the middle of my treatment from one city to another. I physically gathered all of my records. I had four binders full of paper, and CDs. That's the way that I thought about things, and my background is, as a lawyer, so I would always have the paper and then 12 electronic backups because I was always losing things. I also knew that medical records are typically kept seven to 10 years and so having the physical pieces of paper made me feel comfortable that the records would always be accessible. It wasn't until I had done all of that work that I had found out about Ciitizen and the way that they gather the records for you, which would have saved me a whole lot of time running around trying to get information. That was a huge effort. I also came into this thinking that clinical trials were for people who are about to die. To me, it was a Hail Mary last ditch effort. When I came to my current medical oncologist I was about six months into my diagnosis, I signed up to participate in my first clinical trial, which was a method of genomic testing. It was testing on my original tumor to find out if there were actionable mutations, mutations that had a treatment specific for them. As a result of that trial, which was conducted at Memorial Sloan Kettering, I found out I had the PIK3CA Mutation, which has led to my second treatment, which I'm still on, which is Piqray. I'm thankful I learned early on that clinical trials are not just about taking medicine. I'm sure Sheila will talk about her experiences of actually being on an experimental treatment that has worked wonders for her. But clinical trials are also about learning, just learning about how tests are run, or about a different technique. I'm actually in a clinical trial right now, that is looking at your blood work and circulating tumor DNA and the idea is to be able to give doctors a leading indicator, and they think they're going to be able to tell doctors a year to 18 months in advance, when cancer is progressing or mutating such that you're going to have a progression. So my experiences with clinical trials have all been about taking my data, taking my blood, taking my tissue, testing it and then giving me information about it, which is, I think it definitely was something that I had not thought of, in terms of participating in a clinical trial. That's been a great experience. I'm going to get on my soapbox for a second as a lawyer, I'm always super interested in informed consent. I'm always super interested in the documents that people have to read. I'm always super interested in the Justice piece of the people who really need the trials getting access to the trials, but I have a nonprofit, and through my nonprofit, I recruit lawyers. One of the things I want to tell everybody who is listening, if you are getting into a clinical trial, and you don't understand the type of paperwork, if you don't understand the consent, I will find a lawyer in your area to help you interpret that document. Everybody needs to understand 100% what they're signing. I'm not saying that that means that anybody's doing anything nefarious, it's just that these documents are often written in language that us lawyers use, and it's a whole jargon all on its own, just like medical jargon. Don't make the documents, or not understanding what they are, be a barrier to participating in a trial, because I'm happy to help with that. Laura Carfang: Wonderful, thank you. That was Connect4 legal services. To segue from there, Sheila, what was your experience with clinical trials? When did you know that you wanted to get involved? Sheila: I had a fourth progression, on my sixth line of treatment. My doctor said it was progressing again. I said, well, what do you want to do? So she said, well, you can go back to a standard one that's already an approved treatment, or you can try this clinical trial. And I said sure. My platform is clinical trials and getting black women and men to participate in clinical trials. Considering the medical mysteries, our history, and our cultural difference, I said sure. I've been on it since July of 2018. Like Abigail was saying about informed consent, you have to make it something where I can understand it or, even in a black community, make it so the transportation or daycare is taken care of, make it easier for people to participate in clinical trials. When I was on Twitter, I saw somebody say, well I have to pay for parking. Why did I have to pay for parking? This should all be human centered to the point where you make it easier for people to participate in clinical trials. Don't make it harder. It's already hard enough. It wasn't a last resort. I just decided, if I'm gonna walk the walk, I’m going to talk the talk. That's when I decided to participate. As far as medical records, in the military you get a stack of medical records when you retire. You don’t know what to do with all of it. Luckily, for my hospital, I joined Ciitizen . I was talking to Sophia and Ricky Farley, and said, why don't you try to get people involved in Ciitizen , so that all medical records are in one location. If I want to see my scan, I can see my scan. If I want to see anything from 10 years ago, I want to be able to just go on a computer and see it. I don't have to need all this paperwork. I think it's all about education. What people don't understand, too, is from the Tuskegee Study, the IRB was formed. There are so many guidelines now and protocols with clinical trials, we're protected from things like syphilis, and the Tuskegee Study. Laura Carfang: Exactly. I'm going to turn to Martin now, and I'm going to bring him back on to join us in this conversation, because this is a great segue to actually linger a little bit more on exactly what you were saying, Sheila, about informed consent, some of the ethics around clinical trials, as well as the protections that the institutional review board is going under and all of that. So Martin, can you explain a little bit about what those best practices are to ensure the health and safety of people participating? Martin Naley: I just want to pick up on something that was mentioned a moment ago about minority participation in clinical trials. I found some numbers just recently, I was working on a project and came across these. African Americans make up 12% of the US population, but only 5% of the clinical trial population, which is definitely an underrepresentation. Then you look at Hispanic population, and that's 16% of the United States, but only 1% of clinical trial participants. That tells you there's a lot of room for improvement. Overall, about 20 to 40% of patients could qualify for clinical trials, that's the estimate out there based on academic experts. I've actually found trials for just about every person who's come through our service, so it's probably higher than that 20 to 40%, but only 8% participate today.Then you look among ethnic subpopulations, and white people just have a much better chance of participating in research than anybody else. Any solution that comes to bear for clinical trial matching has to address that inequity, or it's not a solution. That's our point of view. Just wanted to get that out there. Regarding protections, I think a lot of the protections exist today because of what was mentioned here about Tuskegee, and so on. There were poor protections in the past, and exploitation of different groups of people to do research and that is unconscionable. That’s why these protections do exist. Every clinical trial is overseen by an Investigational Review Board, which is part of a medical institution. Every institution has one. Also, there are investigational review boards that span multiple institutions so that community hospitals can also offer research without having to develop their own IRBs. These IRBs meet and talk about a protocol and they won't allow that protocol to happen at an institution unless safeguards are in place. Those safeguards are described in an informed consent document that's given to the patient. Like Abigail said, those can be really dense. It’s important to get help and to read through them. I do believe they're written with the best intention to protect the patients who participate in research. Abigail: I would agree with that. As a lawyer, I've drafted lots of documents where I understood what they said, but the lay person would not. I wasn't casting aspersions on anybody's intentions, they're just that us lawyers do speak in a different language. It’s important to know that, and it's important to know as a patient walking into it that nobody's trying to hide the ball. Nobody's trying to confuse you or make it more difficult. It's legitimately that everyday words that people use, oftentimes have a different definition in the legal context. Also, everyday words often have a different definition in the medical context. It legitimately is you're just walking into somebody else's world in terms of language. Sheila: We had this discussion on Twitter the other day, where it said, Are you looking at me as a subject or a patient? Do I look like a subject? No, I don't look like a subject. I look like a patient. Don't call me a subject. That's another thing, a cultural difference. experimental drug. We're already thinking that we’re being used as guinea pigs. We’re patients and patients matter. Alyson: Right, I wanted to jump in and talk about my experience when I came very close to being in a clinical trial. I mentioned earlier that I thought I was going to enroll, but I didn't. I wanted to sort of recount what it was like to go and learn about the trial. I went to the office of the trial coordinator and there were a couple of nurses who focused on trials who were walking me through the study design. It was very complicated. I have a PhD, not in science but in literature, and I've worked in the pharmaceutical industry for 15 years and I had difficulty understanding what they were talking about with the study design. My husband looked at me, a Yale graduate, and he whispered in my ear, What the hell is a wild type? There's a long way to go with trials, even with just writing trials in a way that makes sense to people. I could have easily run the other way. There were no handouts about what the trial was or about what the terminology meant. They gave me a copy of the study design that the scientists used. Frankly, it was appalling, the way information is communicated to patients. Something I really feel passionate about is bringing that to light for a few reasons. One, if you're in that situation, and you're considering a trial, and you have no idea what they're talking about, just realize you're not alone, as most patients don't have any idea. You guys need to do a better job of taking things down and explaining them. It’s a big piece of why people don’t enroll. People don’t know what a wild type is. Martin Naley: Right, and nowhere in your medical record will it ever say that you're wild type. It would be the absence of information, you just wouldn't have a mutation in that gene reported. That's what makes it impossible. These patients and trials are desperate for each other and yet, they're just ships in the night. The trials are out there, saying, come on down if you're a wild type, and nobody knows. Laura Carfang: It seems like we could do a lot to bring the groups together, which is what we're working on doing. It's all of these constituents. It may even be part of the IRB process or the recruitment process of meeting with the patients and saying, does this actually make sense? It’s saying, I'm the primary investigator, but what questions do you have that we could have this handout or this FAQ sheet that we give to people in advance and really start moving the needle that way? We talked a lot about your experience collecting the data piece, and then participating in the long arduous process of becoming clinical trials. Martin, it sounds like what you're doing at Ciitizen is really trying to alleviate some of these pain points. Can you talk a little bit about what your process is like for collecting the medical records and then matching and what can a patient expect when they reach out to Ciitizen to get more information and get involved? Martin Naley: It's all designed to be a 60 second process. It's all online. You go to the Ciitizen website and sign up , you can do it on your phone. You take a picture of your driver's license, and then Ciitizen uses your signup form with your ID to go to every place that you've had medical care, and make that request on your behalf. It's your legal right to get your data. Ciitizen helps you exercise that right, which is afforded to you, under HIPAA. A lot of people talk about HIPAA as kind of a blocker in healthcare. It's actually not intended to do that at all. The P in HIPAA is not privacy, its portability. The idea is to make your data available to you where you want it. We go ahead and make those requests. Institutions typically deliver those medical records to us in giant PDF documents, just like what you talked about Sheila, that 1000 page binder of your medical records. I've worked with a lot of companies who have tried to argue that data should be more interoperable and try to fight the system. One of the things we realized at Ciitizen is that it wasn't worth it. You're not going to change the system everywhere. There's a lot of incumbency, in health care. We said, fine, give us those 1000 page PDFs, we'll learn how to read them. What we did was make a machine learning process. Machine learning is a fancy language, but basically what it means is you start a machine, and the machine is wrong all the time. You start feeding documents into the machine, and you just start telling it that it's wrong. Every now and then the machine makes a lucky guess and you verify that that lucky guess was right. Now the machine has learned, when I see this, I want to get that from the document. What Ciitizen has done is made it possible to take that 1000 page PDF, and pull out the information that's important for your cancer care. The machine has gotten to a very high accuracy point where it's almost always right. There's a small team of clinical reviewers who look at the machine outputs. They do the verifying to make sure it keeps on learning, and then also tell the machine when it's getting something wrong. Those things get published as patient cancer cards. As a patient, you start out with the 60 second onboarding process. A couple weeks later, sometimes a couple of days later, sometimes within minutes, you get a digested cancer card of your cancer story from the beginning from all the places that you've had care. From there, you can start using it in different ways. One of the ways is to raise your hand and say I want to try. Then things come my way and we use an algorithm to figure out which trials might be suitable for you. The patient is completely hands off. That's all there is to it. Abigail: And it's free, and doesn't cost the patient anything. If you as a patient are getting your records, the different hospitals are allowed to charge you, they're allowed to charge you a search fee. They're allowed to charge you, per page, even if they're emailing you the records. Here in Florida, they are allowed to charge $1 per page up to a certain amount, and then 25 cents a page thereafter. If you go through Ciitizen , you don't have to pay any of those things. Laura Carfang: I know we're talking about metastatic breast cancer, but can early stages also participate? Or do they have to wait until they're done with active treatment? Martin Naley: I think it's really important to mention that because we can always do an update. If you finish a round of therapy or have a new progression or a new status update, it's a lot easier to do a refresh than it is to start from the beginning in building those cancer cards. We encourage people to sign up, to get everything in place, and then doing updates is not a big deal. The other thing that's important to mention is we're talking about informed consent, and there's this notion at Ciitizen of a patient's full informed consent, meaning that a patient is receiving their records into Ciitizen, but every use of those records is authorized by the patient. If you're signing up to look for clinical trials, you agree to participate in that process. If your information is going to a second opinion provider, you're authorizing that. Everything that happens with your data is your choice. That's really important. Alyson: I felt very comfortable with the whole process. I didn't initially answer the question of how I got involved with it. To be honest, I wasn't really looking for anything. I just met these guys, because they really got involved in the breast cancer community. I realized that, wow, this would be great if I needed a second opinion. At one point, I actually did need a second opinion and it was very stressful to gather all the records. I could barely get the records in time for the appointment. It would have been great to have some of what I initially didn't. Now I have a full report on it. I have to admit I haven’t really read yet, because I'm not really at the point yet where I need a trial but it was really comforting to see the sheer volume. You always feel like oh, I don't have very many but I was so overwhelmed by both the number and the range of types of trials. It made me feel really good to know you have so many options. Martin Naley: Thank you. It's important to note also that some people do see 50 or more clinical trials in their report. Just for context, we have over 700 that are fully described in our database right now. We're working hard to cut those down for people. Out of those 50 or 100, we always try hard to get to the five or so that are within your location preferences and that are full match.The first few times I delivered those reports to people and they saw 50 they freaked out and I needed to figure out how to give them some markers in the road. We don't recommend anything. I'd say we're not medical professionals. It's not something we would do, but we want to make sure that there are landmarks to help people navigate these reports. Laura Carfang: As we wrap up today's conversation, I would love to go around and ask each of you what piece of advice would you leave our listeners with today with regards to clinical trials? Alyson: I would say definitely sign up for Ciitizen , you have nothing to lose. It’s good planning for the future. You might want to have a second opinion or you might want to enroll in a trial. Why not? It's free. The other thing I'll say is for people with triple negative breast cancer, which is what I have, there's still so much to be discovered. It's really a challenging cancer to treat but there's so much out there in clinical trials. Life extends possibilities exist out there. I think it's important for everybody, but especially if you have triple negative. Please pay attention. Abigail: I think, other than signing up for Ciitizen, because you know, that's the obvious takeaway in terms of having everything in one place, I think the big piece of advice that I would give to everybody even starting out is to have this conversation with your doctor regularly. Even if you're doing amazing on whatever line of treatment that you're on, asking your doctor, is there anything else that I could participate in, such as the genomic trial that I was able to participate in that led me to my second line of treatment. Continually talk about that, not just with your doctor, but with your friends, I think that for those of us in the MBC community, we are talking to each other regularly, and knowing other people's experiences or being able to participate in a trial, at say, an institution that might not be local to you, will only result in being able to hear about different options, at least to continue the conversation. Sheila: Like Abigail was saying, just continue to have open conversations with your doctor about clinical trials, about your health. This is your body. This is you. There's no right or wrong question. Continue to ask questions and ask your doctor about Ciitizen. What do you think? Have you heard of IT? What do you think about clinical trial matching ? I tell my doctor everything. Just continue to have those open conversations. This is your body. This is your life. This is important. We want to live. We want trials. This is top notch research. This is excellent research that, like I said, I've been on for two and a half years, and it's working well. I want that to work for everybody. Laura Carfang: Martin, I feel like we just scratched the surface, one hour deep dive into clinical trials, how to get involved with Ciitizen, and where to go from here. I'll definitely be picking your brain later so we can continue the conversation. If there's one piece of advice, or anything you want to stress to leave our listeners with today, what would it be? Martin Naley: A diagnosis of cancer is so terrifying and so overwhelming. One of the things that I'm so impressed about is the community that exists for patients with cancer, like people on this call today. Even people who aren't feeling well are doing everything they can to help other people because they know that they're not feeling well. I'm moved by that. When you're diagnosed with cancer, you're thrown in the deep end. Everything is really foreign to you. Even if you're an English speaker and you are well educated, in the most fortunate circumstances, it can still be overwhelming and almost impossible to understand. We're here to help. That's all. We want to make sure that when you hit those moments where you say I don't know what to do, or I don't know what this means that you know you can reach out. If you go through Ciitizens' process and you get a match report from us, you can talk to me personally, I'm here to help. Everybody who is diagnosed with cancer needs a hand sometimes. That's what we're here for. Laura Carfang: Thank you everyone for participating, sharing your stories, providing us with just a wealth of information and the tools we need to figure out how to collect and take ownership of our medical data, and also how to find these amazing matching services so we can actually advance research, not only benefiting ourselves, but future generations. I also feel like there's a lot of topics we haven't yet talked about with regards to clinical trials. This was just a crash course 101, but we will be hosting part two. I believe some of the questions that we want to address are around financial toxicity. If you're participating in a trial, if you have children, who's watching them during daycare? Who is paying for the cost to travel to and from the clinical trial site? These are some real concerns that need to be taken into consideration. As we heard earlier in the conversation today, Martin brought up some great points about the percentages of people participating in clinical trials and we need to do better, we need to be more inclusive, and create a more diverse environment in these clinical trials so that we can have the data and the knowledge and the research so that we know that when we do prescribe chemotherapies or various drugs, understanding breast cancer further, how it affects different populations. This is really important, so stay tuned for part two. If you sign up for Ciitizen, be sure to mention you hear about them from Surviving Breast Cancer (SBC). It would mean a lot to the SBC team!

Transcription produced by Nellie Maloney Have you been screened for a genetic predisposition towards breast cancer? I have. My results returned a "Variant of Unknown Significance," or VUS. What is a Variant of Unknown Significance? It’s a common question and I am pleased to have Dr. Mártir-Negrón, a medical geneticist at Miami Cancer Institute, part of Baptist Health South Florida, and trained in internal medicine, genetic diagnosis and the treatment of patients with hereditary disorders to help answer this question! Laura: Dr. Mártir-Negrón, I understand when we get our genetic testing back and read through the results, sometimes we get what is called a variant of unknown significance, also referred to as VUS. Can you explain what this means and how it impacts breast cancer treatment decisions? Dr. Mártir-Negrón: What a variant of unknown significance means is that there was a change that was found in you. But guess what, we all have changes in our genes; that’s what makes us unique and who we are. The only ones that we know will cause problems are the ones that we call pathogenic . Based on data, we know that 90% of these inconclusive changes are benign. At the lab we'll continue to review, and when there is more data, they will reach out to whoever ordered the test to inform them of any new findings. The person who ordered the test is the one that is going to receive the reclassification. Again, 90% of the cases are benign, so we call it negative until proven otherwise. In terms of treatment, we don't do anything with that information and no action is taken. But, if we give recommendations, it's not because of the inconclusive work, it’s what we're seeing in terms of one’s family history. With the inconclusive result, you're always going to have that change, you were born with that change. What it changes is our interpretation. When we see that somebody has a variant of unknown significance or is inconclusive, we look at ClinVar. ClinVar is a part of the National Institute of Health and aggregates information about genomic variation and its relationship to human health. Obviously, no names or personal data are disclosed. What we do is when we see any inconclusives, we will look at ClinVar to see what all the labs are saying. Laura Carfang: That's such a great point. ClinVar is a freely available public archive of human genetic variations and interpretations of the relationships to disease and other conditions. Abigail Johnston: Just another reason why talking to the right doctor about the right topic is so important. Dr. Mártir-Negrón is a geneticist, you don't mind saying you don't know, whereas other doctors in other specialties often avoid saying "I don't know something" and it's very important to remember that.

By Nate Kolmodin My mother was diagnosed in May 2004 and found much-needed peace in running. She said it kept her energy up, no matter how much she could exert herself, and kept her from feeling less than she was. As she was running, she told me she could feel the endorphins kicking in. Almost every time she was finished running, she would return home with a ‘runner's-high’ and feel almost euphoric. As the treatment increased from chemo to radiation, she exercised less and less, but as the treatment slowed her down, she still did her best to stay active and has been cancer-free since 2006 . I was little at the time and didn’t realize my mom had cancer until recently. I used to wait at the finish line of triathlons (with Team Survivor) for my mom to finish triumphantly, not knowing what that meant for her. Now that I know, it makes me so proud of her, knowing my mother never gave up on herself, and the rest of our family. Tips for Staying Active During Treatment Below are some tips I’ve learned about staying active during treatment: Exercise is good for everybody. It's essential for people with breast cancer to remember: Even though you may feel like nothing is in your control, you can always take care of your body in the most natural of ways- by moving it. Exercise may feel exhausting to even think about, but in practice, it can make you less likely to have your cancer come back or progress compared with those who were inactive. Any type of exercise can feel rewarding. Don’t feel the need to overwork yourself, it's important to pace yourself, and do what you and your doctor feel comfortable with. Three Types of Exercise Depending on your doctors’ advice, there are three types of exercise that can help your body and mind the most. Stretching : Stretching is important to maintain mobility. If you aren’t ready for more vigorous exercise, being as flexible as possible is key. Yoga is a perfect example of a low impact and possibly spiritually fulfilling way to move your body. Aerobic Exercise : Aerobic exercises such as running, swimming, and brisk walking are great options to burn calories and lose weight, while also building cardiovascular fitness, and lowering risk of stroke, heart attack, and diabetes. Resistance Training : Resistance training is just a fancy term to describe weight lifting and isometric exercises such as wall sits, planks, and squats. Resistance training builds muscle. Many people lose muscle, but gain fat, through cancer treatment. For those with a high fat-to-lean mass ratio, resistance training can be especially helpful. You Can Do This I understand that none of this is a walk in the park (a good form of exercise), but if you spend 30 minutes to an hour a day, at least 5 days a week, your mood will increase and you will feel more relaxed. Keep us posted on how you are doing and feeling. We love to hear from you! Please email us at info@survivingbreastcancer.org . Looking to start, with a supportive community? Check out our free, virtual movement offerings: https://www.survivingbreastcancer.org/movement-mondays

By Kristen Carter Dear Kristen, What ideas do you have for dealing with brain fog? Dear Reader, This is a topic close to my heart – or head – these days as Taxol knocks my brain offline for a couple of days a week. Brain fog can make it hard to get organized; remember things; complete tasks; find the right words when you speak; learn new things; keep track of names, dates, or your schedule; and make you feel “spacey” and easily distracted. But chemo brain isn’t the only thing that can cause us to feel foggy and unclear. Others include: Cancer itself Dehydration Various medications besides chemo Stress Lack of or poor-quality sleep Hormonal changes Poor diet – treats like candy and chips can provide an immediate brain boost, but aren’t good brain or body fuel (and sweets can lead to a sugar crash) Depression Lack of exercise Too much time on electronic devices Alcohol, which significantly impairs cognitive functioning while in your body, then can cause withdrawal symptoms like fatigue, headache, vertigo, and other brain fog symptoms. In addition, a 2021 study associated chronic alcohol use with increased inflammation in the brain and body, which can lead to increased cognitive impairments and neurological disorders. Many of these triggers are within your power to change. Here are some ideas: Hydration – drink plenty of water, electrolyte drinks, herbal/decaffeinated teas. I’ve been going for IV fluids in the days after my infusions and they help enormously as well. Get good sleep. Go to bed around the same time every day, even on weekends, if you can; wind down at least an hour before bed by shutting off your electronics, which are associated with a higher incidence of insomnia and shorter sleep duration (at the very least, set your phone so that it is in ‘night mode’ after sunset; this will reduce the amount of blue light being emitted); darken your room with blackout shades; run a sleep sound machine or app to mask street or household noises. Check the label of the OTC and prescription medications you’re taking to see if they’re contributing to your fogginess De-stress with deep breathing, yoga, Qi Gong (a personal favorite), or doing something creative Avoid caffeine after about mid-afternoon Get regular exercise – even a little walk can lift the fog Spend time in nature Call a friend – research suggests social connection improves brain function Allow your brain to be still and quiet for a bit – other research shows that even a few mindful minutes can increase concentration Eat well. Brainfoods include Omega 3 oils (the brain is about 60% fat) from fish or supplements. Foods high in antioxidants (such as blueberries, oranges, and nuts) help reduce oxidative stress in the body, which can have a positive effect on the brain and body. Certain stimulants can help as well. Tea or coffee in the morning lift many people’s energy and fog, but be warned that caffeine is dehydrating, so drink some water or other hydrating drinks as well. There are prescription medications that can help if you’re really struggling; ask your doctor about Ritalin or Adderall if you think they might be right for you. Give your brain a workout with a crossword or jigsaw puzzle, a good book, or apps like Elevate These ideas are for the temporary kind of brain fog that affects so many of us now and then. If yours feels unbearable or pervasive, talk to your doctor about it. Much love, Kristen

By Kristen Carter “I wish I’d lived a life true to myself rather than the one others expected of me.” That was the number-one regret expressed by dying people cared for by Australian palliative nurse Bronnie Ware , who worked with hospice patients for almost ten years, and described in her book The Five Regrets of the Dying . They also wish they’d kept friendships alive, worked less, and spent more time with family (cited by every male patient), allowed themselves to be happier, and had the courage to express their feelings – which undoubtedly would have helped them live their lives more authentically. There have been two pivotal experiences in my life that steered me down the road toward my own authenticity: the first was when I realized my true calling in life in my first week of Martha Beck life-coach training and knew that I wanted to help other people (and myself) become more of their “essential selves.” The second, ten years later, followed my diagnosis of metastatic breast cancer. That brought me face-to-face with who and where I was in my life compared to where I would be if I had been even more deliberate in my choices. I swore to myself that if I responded to cancer treatment, I would honor myself and my dreams with every day I had left. Fortunately, I did respond to treatment, and four and a half years later I can honestly say that I am more aligned with my top priorities than ever before. Are you? Do you feel peaceful about the way you spend your days, and who you spend time with? Do you have enough meaning and purpose in your life? Do you spend your free time doing things that fill your spirit? If not, I invite you to tune in to this regular column, in which I write about ways to live without regrets at work, in life, and in your relationships, and offer ideas for loving and caring for your precious self. Wishing you clarity and no regrets. Until next time, Kristen 💕 -- P.S. Kristen will answer any and all questions you might have about trying to live fully while dealing with breast cancer. Feel free to send your questions to her via email at kristen@survivingbreastcancer.org.

By Kristen Carter On August 20th, we held my son’s wedding at our house. After months of planning, we were finally ready. The tent was up, the tables were set, the decorations were in place, and the rehearsal had gone beautifully. We knew there was a possibility of rain in the forecast, but the first hour and a half went perfectly – the procession, the service, and the beginning of the buffet. Then the skies opened. Within about 20 minutes, there was a fast-flowing stream running through the tent from one end to the other, creating a muddy mess. Then, the lightning started and the thunder was crashing right above us, turning the tent poles into lightning rods. We quickly ushered all 60 guests into our living room (with its off-white carpet) and did the speeches there while people finished their food. It turned out to be so lovely and intimate (and much quieter than it was outside!). Then the power went out. The kids wound up cutting their cake on the kitchen table by the light of our cell phones, with the guests crowded all around. It was fabulous. No amount of bad weather or impromptu changes could dampen the spirits or the love that flowed between the bride and groom, and the guests. Here are some of the truths I realized that day, which are similar to the ones cancer has taught me: Have a Plan B in Place, in Advance We had cleared all the clutter out of the living room, just in case we wound up in there because of the weather. In a similar vein, I always like to know what my oncologist has in mind for future treatment if the medication I’m on stops working. So I advocate for myself, ask, and plan. Roll With It We can’t control the weather or what happens to us, but we can choose the story we tell about it, whether it has to do with an event or our health. Maintain Perspective It could almost always be worse. Keep a Sense of Humor If possible, laugh at the circumstances and be grateful for whatever you can. It’s almost always possible. Rely on Professionals Whenever possible, hire good people – caterers who don’t mind cleaning up in the rain, and a good doctor you can rely on to do their absolute best for you. Rely on Friends Everybody pitched in to bring wedding things indoors and to clean up the day after. They lightened the load, just like my friends who have been my chemo buddies. It can be a crazy world, with crazy circumstances, but with the right attitude and the right people, it can all be okay, too. -- P.S. Kristen will answer any and all questions you might have about trying to live fully while dealing with breast cancer. Feel free to send your questions to her via email at kristen@survivingbreastcancer.org.

By William Laferriere At Survivingbreastcancer.org and Después de un Diagnóstico , we strive to break down the many barriers faced by the Latino community vis-à-vis healthcare in the US and throughout the Americas. In fact, our outreach in the last several months has been remarkable, with over 20,000 Spanish translations of our website www.survivingbreastcancer.org . We have a strategy (below) but need help, and therefore are making a direct appeal to you. Many complex and interconnected factors contribute to racial disparities in breast cancer development and outcomes. These factors include genetics, lifestyle, access to healthcare, social determinants of health, and limited research conducted in people of color. At Survivingbreastcancer.org , we are creating a Hispanic Outreach Program throughout the Americas looking to break down cultural, socioeconomic, and language barriers, and improve access to breast cancer screenings. This last is an essential factor in improving breast cancer outcomes among Hispanic women. The following are several strategies that we are suggesting to increase breast cancer awareness and screenings: Cultural context-specific breast cancer awareness campaigns Enhancing the availability of breast cancer-specific education and support programs Developing partnerships with community organizations to increase breast cancer screening access in local areas Improving breast cancer screening guidelines to better reflect the needs of Hispanic women In order to improve access to care for Hispanic women, we must work together to create a culturally sensitive healthcare environment where these women feel comfortable talking about their health needs and accessing screening services. Community-based programs designed to provide educational resources about breast cancer in Spanish can be an effective way of reaching this population. Additionally, healthcare providers must be aware of the cultural dynamics at play in order to provide culturally sensitive care. We must first understand the underlying cultural issues that can prevent Hispanic individuals from seeking medical help for breast cancer. Many Hispanic women have difficulty discussing their bodies and health with others, especially if they are unfamiliar or uncomfortable with the healthcare system. Additionally, language and cultural barriers can make it difficult to access proper healthcare services. This means that many Hispanic women are not receiving the necessary information about breast cancer risk factors and screenings that could save their lives. Note: 19% of the population in the continental US and Hawaii identify themselves as Hispanic or Latino. In addition, more than 3 million Hispanic Americans reside in Puerto Rico, a US territory. Cancer is the leading cause of death among Hispanic people, accounting for 20% of deaths. While Hispanic men and women are less likely than non-Hispanic white individuals to be diagnosed with the most common cancers (lung, colorectal, breast, and prostate), they have a higher risk for cancers associated with infectious agents, such as the liver, stomach, and cervix. However, there is much variation in the cancer burden among Hispanic subgroups, with Mexican Americans having the highest cancer prevalence. Please stay tuned for more developments at Survivingbreastcancer.org and Después de un Diagnóstico , and share our programs and resources in English and Spanish with your community. Learn more: Después de un Diagnóstico Historias inspiradoras Calendario de eventos SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Kristen Carter Valentine’s Day can be a wonderful holiday if you’re in a relationship with someone you care for (and who cares for you). But whether you’re in such a partnership or not, there is one person you should love above all others: yourself. “What??” you might ask. “What about my soulmate? What about my children? My parents?” To which I would answer: The longest relationship you will have in your life is the one you have with yourself. The more fully you love yourself, the more fully you can love others. Wouldn’t you love to be a role model to your children of believing they deserve to love themselves fully just the way they are? Sadly, many – if not most – of us grew up thinking it was selfish or arrogant to love ourselves. And virtually all of us have voices in our head urging us to do more and be better in one way or another – in other words, voices that say we’re not good enough, so we’re probably unlovable, too. Not loving ourselves can have serious consequences, however. If we think we’re not good enough: We put ourselves last We feel guilty when we do something for ourselves We don’t like what we see when we look in the mirror We criticize ourselves for mistakes, heaping on the negative self-talk We do things we don’t want to do for others, either because they told us we had to or because we want to win their approval We tell ourselves we’re not worthy of anything, so we don’t treat ourselves to anything special We can’t accept compliments We don’t take time for ourselves to do anything fun on our own terms We’re unable to receive when people give us presents or the gift of their time – or, if we do, we immediately start to think of ways to repay them Does any of that sound familiar? I know they certainly did for me before I wised up and began allowing myself to accept and love myself just the way I am. It doesn’t mean I feel perfect or that I’ve stopped trying to grow as a person, but I do allow myself the grace of unconditional acceptance. At least most of the time. It’s an ongoing practice. So how do you begin to accept and love yourself? Here are several ideas. Start small. Pick one or two that seem doable, get comfortable with them, and adopt the next one. You will begin to feel more comfortable in your own skin and look at the world and other people differently the more you do. Know that it’s important to love yourself. The first baby step is awareness. Believe that you are worthy of being loved. Accept all parts of yourself (physical, emotional, spiritual, financial, relational) as they are, even though they aren’t all perfect. AND don’t beat yourself up for that. Learn from your mistakes and give yourself credit for working on these things. Be able to enjoy your own company. Look after your health to the best of your ability. Speak to yourself gently, positively, lovingly, empoweringly. Practice asking for and receiving help from others. Observe your thoughts and actions and label them positively. Easily release yourself for something you’re sorry for. Forgive yourself. Let yourself off the hook. Do one guilt-free act of kindness toward yourself every day. This Valentine’s Day, love yourself like the quality of your life depends on it. It does. Learn more: The Alternative to Feeling Like a Victim Reconnect With Your Inner Strengths How To Feel Positive About Life Again I Bloom With Grace AC (After Cancer) Me Author bio: Kristen Carter is a certified coach with a background in communications. She was diagnosed with stage zero breast cancer in 2008 and metastatic breast cancer in 2018. Writing for SBC — sharing tools that help her and others cope and thrive — is a creative outlet for her and one that gives her a sense of meaning and purpose. She can be reached at kristen@survivingbreastcancer.org . SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

Liz Mover joined SBC at the LBBC Thriving Together: 2023 Conference on Metastatic Breast Cancer through SBC’s Educational Grant Program. Read below for Liz’s takeaways from this incredible event! Saturday started with a session called Ask the Expert: Diet, Physical Activity and Sleep, with nutrition expert Rachel Beller, MS, RDN and medical oncologist Pallav K. Mehta, MD. They recommended getting at least six hours of sleep a night and developing a sleep routine. Rachel Beller discussed a few superfoods: fiber and plant-based protein. Both will help with constipation and diarrhea that those undergoing chemotherapy may experience and the protein will help with fatigue. She recommended getting about 35 grams of fiber a day and starting with at least 10 grams before noon. She encouraged us to look at where our fiber is coming from and it shouldn’t be from bars and powders. She mentioned some good sources of fiber: rolled oats/steel cut oats, fiber boosters like chia seeds, and berries. She also explained about flax seed gel (never heard of it before!) and how it can be really helpful with constipation. Some guidelines on hydration: at least 8-10 cups of water per day. Some things that can help with bloating are drinks that you can make with parsley, fennel, and garlic. If nauseous, she suggested trying a teaspoon of ginger juice in water. Dr. Mehta spoke about integrative oncology and encouraged people to look for an oncology certified personal trainer. He said two good places to look for someone who is certified in oncology is the American College of Sports Medicine and the American Council on Exercise . Another session that I really enjoyed was Coping with Grief by Kelly Grosklags, LICSW, BCD, FAAGC. Anticipatory grief isn’t just about death. It can also be when there are changes in your treatment plan. There is a big difference between loss and grief. Loss is the one-time event. Grief is the reaction/response to the loss. Secondary losses are often felt within the MBC community. Some examples are when you are so tired and can no longer attend a child’s sporting events or events with friends; medical menopause and you can no longer have children; your friend passed away and you can no longer call her. Some phrases she said that I really felt were: “You can be hopeful and still scared.” “You can grieve for someone and still be happy.” “You can be grateful and still be upset.” “It’s not our job to make someone comfortable with our story.” “Find the people that understand that.” “Remember that I lived – not that I died.” Thank you, Liz, for attending the LBBC conference with SBC and sharing your takeaways with the SBC community! SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Dawn Oswald Dawn Oswald joined SBC at the LBBC Thriving Together: 2023 Conference on Metastatic Breast Cancer through SBC’s Educational Grant Program. Read below for Dawn’s takeaways from this incredible event! I attended the 2023 conference in person for the first time. I attended via Zoom last year. The reason I chose to attend in person is because I believe it is more personal and I learn more in person. LBBC and SBC offered grants to help me attend the conference. I am greatly thankful for the support. On Saturday, I attended “Ask the Expert: Diet, Physical Activity, and Sleep” with Rachel Beller, MS, RDN, and Pallav Mehta, MD, where we learned about the importance of fiber and ideas of how to incorporate it, plant-based foods, and oncology-specific exercises (see more in Liz Mover’s LBBC’s takeaways ). I also went to the session “Recently Approved Therapies and Promising Approaches for the Future” by Nancy U. Lin, MD. In this presentation, Dr. Lin shared information about gene mutations and applicable therapies, MBC-specific treatment options for improved survival rates, treatment resistance, and different therapies based on hormone receptor status. Some of the many drugs discussed in Dr. Lin’s presentation included: Piqray, Afinitor, and capivasertib for the P13K mutation Trodelvy for triple-negative breast cancer Neratinib, tucatinib, and Margenza for HER2-positive breast cancer Antibody-drug conjugates: Trodelvy and Enhertu Targeted therapies: Kisqali, Verzenio, Lynparza, Talzenna, and Piqray Endocrine therapy for estrogen-positive breast cancer Everolimus, elacestrant, alpelisib, and fulvestrant as second-line therapies for estrogen-positive breast cancer Chemotherapies: Xeloda, Taxotere, Gemzar, Ixempra, Halaven, and Abraxane Chemotherapies for HER2-positive breast cancer: Herceptin, Perjeta, Tykerb, Afinitor, and Ibrance I participated in a movement class, “Reclaiming the Body’s Healing Power Through Movement & Dance” with Nancy Herard-Marshall, MS, LCAT, BC-DMT. In this activity we were asked to consider some introspective questions about our own cancer experiences, our connections with the community, and understanding the power of our own story. We did some exercises and then we just danced any way we wanted. We were trying to throw the cancer out of our bodies, if only we could. I had a great time dancing. Exercise is very important. I try to walk at least a couple times a week with my puppy and do my lymphedema exercises. Check out Project Life MBC for upcoming events. I attended an evening play called “IV: Our Lives,” and it was very good. The play was about men and women learning that they have metastatic breast cancer. It was based on interviews with 100 men and women asking them how they felt when they were told they had metastatic breast cancer. The play was in their own words. Let’s just say it had a lot of adult language. The hope is that recording this and getting it out there for others to hear will help get the awareness out there about MBC. Their mission is to educate family, friends, oncology teams, colleagues and those newly diagnosed with MBC. It was a little emotional and lasted for 1.5 hours. Thank God they gave us tissues. On Sunday I went to a panel called “Shared Voices: Learning from Each Other,” with four speakers with MBC: Thomasina Butler, Sheila Godreau, Cheryl Law, and Deb Ontiveros. One of the panelists, Thomasina Butler, has been living with MBC since 2005. If that doesn’t give us hope, then I don’t know what will. I am not losing my hope or my faith. The panelists answered MBC-related questions for an hour. We all have our own experiences with MBC. It is always good to share. The conference ended with “Living Well with Metastatic Breast Cancer,” presented by Stephanie Broadnax Broussard, LCSW, ACHP-SW and Don S. Dizon, MD, FACP, FASCO. The presenters discussed sexual intercourse and ways to approach sex as someone who has experienced breast cancer and treatment. It might be something as simple as vaginal dryness. They recommended oils. My suggestion is, if you're having problems in that area, to see a sex therapist or at least tell your doctor. In conclusion, I highly recommend attending the LBBC MBC conference next year. This year’s conference was full of information, and it gives me hope that there are people out there to help us. If you want to attend next year, you can visit the LBBC website and subscribe to receive information as it becomes available. Thank you, Dawn, for attending the LBBC conference with SBC and sharing your takeaways with the SBC community! SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

Hormone receptor-positive (HR+) breast cancer accounts for a significant percentage of breast cancer diagnoses, characterized by the presence of hormone receptors—estrogen and progesterone receptors—on cancer cells. Understanding HR+ breast cancer and the latest treatment updates is pivotal in offering tailored therapies for improved outcomes. Understanding Hormone Receptor-Positive Breast Cancer HR+ breast cancer is defined by cancer cells having receptors for estrogen, progesterone, or both. These receptors fuel the growth of cancer cells, making HR+ breast cancer sensitive to hormonal therapies. Diagnosis and Subtyping Diagnostic Techniques: Immunohistochemistry (IHC) and other laboratory tests detect hormone receptor status. Subtyping HR+ breast cancer helps guide treatment decisions. Hormonal Therapies: Cornerstone of Treatment Endocrine Therapy Options: Selective Estrogen Receptor Modulators (SERMs) like tamoxifen block estrogen's effects on cancer cells. Aromatase Inhibitors (AIs) prevent estrogen production in postmenopausal women. Combination Therapies: Combining hormonal therapies or pairing with targeted agents enhances efficacy. Latest Treatment Updates CDK4/6 Inhibitors: CDK4/6 inhibitors (e.g., palbociclib, ribociclib, abemaciclib) are game-changers in HR+ metastatic breast cancer. Combined with hormonal therapies, they significantly prolong progression-free survival. Extended Endocrine Therapy: Recent studies evaluate the benefit of extended hormonal therapy beyond the standard 5-year duration. Offers potential for reducing recurrence risk in HR+ early-stage breast cancer. Precision Medicine: Tailoring Treatments Genomic Profiling: Advancements in genomic testing aid in identifying HR+ breast cancer subtypes and predicting response to treatments. Personalized medicine directs therapies based on individual tumor characteristics. Challenges and Emerging Research Resistance Mechanisms: Development of resistance to hormonal therapies remains a challenge. Ongoing research explores mechanisms of resistance and novel treatment strategies. Immunotherapy in HR+ Breast Cancer: Exploring the role of immunotherapy, including immune checkpoint inhibitors, in HR+ breast cancer treatment. Management Beyond Treatment Side Effect Management: Addressing side effects of hormonal therapies, such as hot flashes, bone health issues, and menopausal symptoms. Patient Support and Survivorship: Importance of patient support programs, survivorship care plans, and psychosocial support for HR+ breast cancer survivors. Advancements in HR+ Breast Cancer Treatment The landscape of HR+ breast cancer treatment is continually evolving with innovative therapies and precision medicine approaches. Latest updates in hormonal therapies, combination strategies, and precision medicine offer new avenues for improved outcomes, emphasizing the importance of tailored treatments and ongoing research to combat HR+ breast cancer effectively.

At SBC we received a heartfelt, brilliant note from community member and MBC Leadership team participant Kathleen Friel, regarding how to properly listen to and respond when speaking with someone with a speech impairment. (See her email below).   Kathleen’s memo got me to thinking about how I can personally improve and develop effective listening habits, and after some quick research I came up with the following:   Effective listening is a crucial skill that goes beyond simply hearing words; it involves fully comprehending and interpreting the message being conveyed. One key aspect of effective listening is providing the speaker with your undivided attention. This means putting aside distractions, such as phones or other electronic devices, and maintaining eye contact to signal that you are fully engaged. Furthermore, active listening involves non-verbal cues, like nodding or mirroring the speaker's body language, to convey understanding and encouragement. In addition to non-verbal cues, paraphrasing and summarizing the speaker's message demonstrates that you are not only hearing but also processing the information.   This reflective aspect of listening ensures that both parties are on the same page, fostering clarity and preventing misunderstandings. It's essential to refrain from interrupting and allow the speaker to express themselves fully before responding. This patience and respect contribute to a more open and communicative environment, where individuals feel heard and valued.   Ultimately, effective listening is a skill that strengthens relationships, promotes understanding, and facilitates successful communication.   …the message from Kathleen Hi Friends, I am writing to share a tip sheet that may help you feel better prepared to interact with people who have a speech impairment. Some people, like me, have a lifelong speech impairment. Others may be experiencing extreme fatigue, dry mouth, or mouth sores. I’d love to make SBC groups more inclusive of people with speech impairments. This TNT training is a great start!   In essence, it’s simple: we all  want to be heard. Think of your own experiences in SBC groups – don’t you love it when we all have time and space to be heard! Everyone should be able to speak. Interruptions and repeating are generally seen as demeaning. I answered a question on Sunday saying if you want to repeat what someone said, ask. I want to step back a tad. Perhaps first, ask if they want to use the chat to share. During such chat-writing time, it would be ideal for the group to quietly wait. (Like, 2 min or less, not forever! Most people will type small bits of info, hit enter, then type more, which is more like the beat of a conversation.)   Common things I’ve encountered •           Assumption that I’m mentally impaired. Someone’s speech does not correlate with intellect.   •           People finishing my sentences or interrupting, often with something wildly different from what I was trying to say. Give people the chance to speak for themselves.   •           People not recognizing that those with disabilities have lives just as complex as everyone else. People often seem shocked when I talk about dating, work, the fact that I live alone and drive… most people don’t have to hear, ”Oh WOW you’re so inspiring,” when they drive to the store.   •           Folks unaware how carefully I plan when I’m going to talk, and unaware of the unease I feel when the plans don’t go smoothly. It’s not that different from the planning that other people with disabilities do. Imagine arranging ahead to have a ramp at the restaurant you’re meeting friends at. You may feel proud of your master plan. Then of course, no ramp at the restaurant. The planning and organizing that people with speech impairments do are not as visible, but just as important. Examples: resting before gathering, typing out things in a Word doc that I think I might want to put in the chat.  If you call on someone with a speech impairment and we need a second to take a drink or sit up straight, be patient. We’ve got a LOT going on behind the scenes! 😊   •           I know this shouldn’t need to be said, but no teasing! I grew up being teased, as most people with disabilities do. I’m over it. Teasing is painful, not funny, and not cool.   I hope this all helps!! Kathleen

By Wendi Gwaltney What do you do when one of your best friends calls you to tell you she has stage 2 breast cancer ? I will call her Mary for the sake of privacy. She was 52 years old at the time. We had been friends since we were 12. I wanted more time. The emotions flowing through your body are immeasurable. What do you say ? What do you do? How can I help you? As a nurse, I knew her prognosis was good, but I was still scared.  The desire to run to her house and hold on tight ran through me. In 2020, to hold someone tight was out of the question. Amid a pandemic, cancer strikes! Covid-19 was breaking records globally. Vaccines were not yet available. People were dying! How can I help  without making it worse? I am a nurse. Although my time at the bedside was limited, I was still at risk of contracting this contagious disease.  Mary is a humble soul. She appreciates offers of assistance. She asks for nothing. We talked and texted frequently during this time. She said she would listen to music on her phone during her treatments but did not have earbuds.  As a fan of Amazon Kindle, I ordered her a Fire tablet and a set of Bluetooth earbuds. I shared with her different books that I was reading or listening to. I told her about Amazon Prime’s benefits, including books, music, and videos. It gave us something to talk about other than her cancer and treatments.  Mary would discuss her cancer. She talked about how the cancer treatments made her feel.  She told me about recommendations from her care team to help her manage the side effects   of chemotherapy and radiation. I think it was during her second round of chemotherapy that she became ill with a respiratory infection. No, it was not Covid. Pneumonia was bad enough in her weakened state. She was hospitalized in September 2020 for a week. This was just a couple of weeks before her birthday.  Due to Covid quarantines, a social gathering for her birthday could not happen. My husband and I put together a celebration. We delivered dinner, a cake, flowers, and balloons. The items were placed at her door, and we quickly moved away. Pictures were taken. She was thinner and wearing a scarf. She was beautiful! At one point, her care team decided to stop chemotherapy. After a few weeks of recovery, she had radiation and a lumpectomy. She continues to take Tamoxifen.  Today, her beautiful hair has grown back. She even has to get it trimmed to keep it tidy. She maintains her weight. She enjoys spending time with her husband and son.  I asked her recently if I had tried to do too much with the Amazon gifts. I admitted that I did not know what to do to help. In her usual modest self, she expressed her appreciation that I was there for her.  Mary, I will always be grateful for your steadiness in my life. You are a survivor and a leader! Thank you for being my friend! Read More: Supporting Loved Ones with Breast Cancer: How to Offer Meaningful Help Cancer Etiquette: How to Talk With Loved Ones About Their Breast Cancer Navigating Relationships After a Breast Cancer Diagnosis Navigating Cancer Treatment: Top Tips from an Oncology Pharmacist On the Podcast: Breast Cancer Conversations Granting Wishes Brings Joy with Elesha Snyder & Jan Hillman Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

Guest Blogger, Cora ( @boobambassador on Instagram), weaves a delightful yarn dealing with the myriad issues of Breast Cancer. What follows is a collection of, and/or excerpts of, blogs that may help one navigate the rough waters of that most heinous diagnosis. You can find her blogs and vlogs here : Scared is what you’re feeling. Brave is what you’re doing.” Emma Donoghue Scared is what you’re feeling. Brave is what you’re doing.” Emma Donoghue I’m human. Contrary to beliefs that I’m a Super Warrior chick (which I kind of am), I still struggle with a lot of things these days. Not sure if it’s post cancer angst, old age, menopause, or just the way the fecking stars are aligned. Which ever…..it’s been a funky week for me, and I needed to get that off my “foobs”/chest. I woke up this morning with the thought that…..holy shite….it’s already half way through the year. Winter is coming!!!!!Reference to Game of Thrones for those of you that don’t watch it. But seriously…..I almost had a panic attack. Like….Christ on a bike…..I’m NOT ready for another Winter ALONE!!! My hopes for even a second date have been dashed….the dude has dropped off the face of the earth. Hopefully he hasn’t dropped off the face of a cliff in the White Mountains (which was the last text I got from him over a week ago as he set off to go hiking ). More likely, he met someone closer to where he lives….which is perfectly fine and TOTALLY understandable. Just wish he had the balls to drop me a text, and not just disappear. So…..back to the drawing board I go. Man, is it EXHAUSTING!! I may have to just throw in the towel, and join the Nunnery, because at this rate, I’m a born again virgin anyway!!! Plus another upside would be that there would be more help with schlepping in the wood!!!! LMArseO!!! Not EVER going to happen. Now I know what your thinking. Cora…..be positive. Don’t wish or worry your life away. To which I would answer….tell me to be more positive than I already am 98% of the time…..and I will punch you in the head. Not literally. Figuratively….but there may be a wee slap if you were in front of me. Just a gentle one, because I love you. And I work VERY hard at not worrying too much….but sometimes it gets the better of me. Like when I was in the shower this morning doing my self Breast exam (#Buddy2buddy)….low and fecking behold….Louise had what felt like a lump on the medial aspect of my foob. Can you say PUKE!!! Which I almost did. But after poking and feeling the shite out of her pretty much ALL day (in between patients of course)…..I have come to the conclusion that it is just a wrinkle in my implant that when in a certain position, feels like a small lump. Menopause Ain’t for Sissies…. Holy crap….it happened again!! Not AS bad as the first time….but still disconcerting none the less. And in the bloody car AGAIN! I just got the heating fixed today. Should have left if stuck on arctic freeze instead!! Figured this would be an appropriate time to share the FB post I wrote about the first time I experienced one of the joys of being a woman, to the people out in Blog land. Enjoy So….a funny thing happened to me on me way to work this morning. Not funny “ha ha”, but funny “weird”! There I was, driving along, minding me own business, when all of a sudden…..me ears are on FIRE!! I mean….hot enough to fry a bloody egg..on fire !!! And I’m thinking…WTFeck! Am I having a reaction to my cancer fighting drug Tamoxifen (cause that’s the only medicine I’m taking).?? And that makes me panic slightly because then I’m up Shite creek without a paddle…or a way to fight my cancer. So I get to work, and start to take off me jacket & gloves (‘cause of course it’s cold enough outside to freeze the balls off a brass monkey ), and I recoil in fear and slight disgust at what I’m seeing in front of me!! I have this “rash” spreading up from me hands towards me shoulders . So now I’m thinking….Christ on a bike…..What. The. Feck. Is. Going. On!!!!! I solicit an opinion from my nice coworker….who upon taking one look at me….ever so briefly….steps back away from me. Which I don’t blame her…..because I looked slightly hideous. Or contagious. Or a combo of both . So….I’ll try to cut this ramble short, and say I made an appointment with a wonderful nurse practitioner in the clinic where I was working. But by the time I got in to see her…..my hideous bubonic plague like “rash”, had subsided to a rosy glow. Kind of like when you have something wrong with your car, and you go and tell the mechanic “there’s a clunk & a rattle”, and they look at you like you have ten heads and say “yah….right!” And the car behaves perfectly FINE for him. That’s how it was for me. BUT….we think we figured it out. It was most likely NOT a bad reaction to my cancer fighting drug (thank the Sweet Jesus!!!! ), but more likely a side effect of it…..my first HOT fecking FLASH!!! Welcome to almost 50 Cora!!!! Me Mum never told me about THIS!!! SO….if you are in my company, and all of a sudden me ears are glowing and hot enough to warm your hands on a cold day, and I develop a rash that spreads from my hands up to my shoulders….DO NOT BE ALARMED!!! Do not run in the opposite direction fearing for YOUR skins integrity. I am NOT contagious. I’m just having a fecking HOT FLASH with accompanying HEAT RASH!! #welcometomenopause #sideeffectsofcancertreatmentscansuck #thejoysofbeingawoman Ps…..not sure this post will help my dating prospects too much….what do you think. LMArseO. Carry on tribe. Hope you are having a lovely evening. I’ll shut up now Dating at 50….. With a Breast Cancer Diagnosis and Foobs to Boot…… Dating at any age can be interesting. But dating when you’ve turned 50, is like biking up Cadillac Mountain on a 3 speed. Slow and painful THEN you add the extra layer of breast cancer boob/foob stuff…..well then shit gets real! PLUS….when you live at the end of the universe, chance meetings are, well….few and far between. So Match, or some such dating site is what we are left with. And let me tell ya…..I would rather be back at the Sisters of No Mercy getting beaten across the back of the head with a bible (true story)……than be on those sites. BUT…spending the rest of my days on this earth without that special man in my life, is NOT an option, so here I am. Cyber dating, and sucking at it. Not that I haven’t met some VERY nice men on Match. Over the past 5 yrs (with a hiatus of a few years because of the cancer thing), I’ve been on approx 10 dates. First dates mind you. No one was horrible, but they were not “second date worthy” in my mind. That’s sounds pretty harsh once it’s written down…..but what I mean is that as nice as they were, I just didn’t want to waste anyone’s time (including my own) on pretending there was something there. I’ll know it when I see it. And at this time, I haven’t. Seen it. Cancerversary…… Yes, There Is Such A Thing Cancerversary , like a cancer experience, is unique. It is a milestone defined by you. It could be the day that a loved one was diagnosed. It might be your own last day of treatment. Or it might be several important dates that occur throughout someone’s cancer journey. I’m on the last day of several that have caused me some angst this year. And they probably will for some years to come. April 21st, 22nd, and 23rd will ALWAYS stand out in my mind, as the days leading up to one of the most challenging of my life. Not THE most challenging (because I’ve had worse), but it’s definitely up there in the challenging scale. On a scale of 0 to 10……we are talking about a 7. My family dropping off like flies, that’s a 10. My husband divorcing me (at the same time as my house renovation was going on), that’s a 9. I guess, because of all those other challenges, cancer was a WEE bit easier for me to handle. April 21st, 2015 I found my lump, or more accurately, my lump found me. Jumped right out at me when I went to free the girls at the end of a trying day. Wasn’t there in the morning when I put me bra on. April 22nd, was the day I got in to see my surgeon. I remember seeing her face when she examined me. I think we both knew it wasn’t just my “usual” cysts, as she performed a biopsy in her office. April 23rd, was the day she called me with the results. It didn’t come as a surprise. I think instinctively my body and mind knew, and were preparing to go in to fight mode. I remember her voice, and how very sad she sounded as she gave me the news. I actually felt worse for her than I did for myself. She had done EVERYTHING possible over the years that she had been monitoring my lumpy, bumpy, cyst filled Boobs, to NOT let me get to this moment. I wanted to reach down the phone, and hold her hand to let her know that this, this devastating news, did not break me. We formulated a plan for me to come in the next morning (even though it was her day off), and we would come up with my plan of care. I also remember the feeling’s and thoughts that swept over me when I put down the phone and sat in my kitchen, alone. I believe the words “OH fuck” popped in to my mind first. Actually it was more like “FUCK, fuck fuck fuck fuck!” Then, it was like a sucker punch to me guts……how am I going to tell Sean that yet another sibling is so very sick. Now THAT almost broke me. Backstory for those who don’t already know, parents….dead. Brother, Gabriel…..dead of a heart attack at 44. Sister, Stephanie…..dead of a diabetic coma at 53 (after surviving a breast cancer diagnosis at 50). Brother, Stephen…..barely alive after being on life support in January of 2015. You get the picture, right. But the thing was, my brother Sean had JUST left Ireland for a 4 day vacation to France with one of my cousins. And I sure as shite, was NOT going to ruin that for him. My cancer would still be there on Monday when he got home. And I would have a concrete plan of action by then also. So, I waited until then to tell him. In the meantime, as I sat there with my thoughts and my kitty cat, I knew I needed my friends. I knew I couldn’t bare the burden of this news alone. So my friends Chandra, Stephanie, and Tamara came to my home and “circled the wagons” so to speak. They wrapped me in as much love and comfort as they could. I’m not sure they know how MUCH that meant to me. I needed them SO VERY much that night. And as always. They were there for me. As was my friend Dave and his new girlfriend Jen, who had been diagnosed with breast cancer the year before me. I called Dave to let him know the news, and even though I had not met Jennifer, she wanted to come with me to my Drs appointment the next day, to help me navigate through all the information that would be coming at me. Her act of kindness is what has inspired me to reach out to newly diagnosed women……to be their “Jennifer” at such a devastating time. To pay it forward to the breast cancer community. I’m writing this blog post at approximately 3am. Sleep has eluded me over the past 3 days, but I know it will get better once Tuesday comes. In the meantime, I will sit with the pain (as the Buddhists teach), because trying to deny its existence will make it come out sideways. I won’t wallow in it. I’ll just let it wash over me, and then continue my journey forward. So if you happen to see me today, and I’m slightly out of sorts, a hug would be appreciated. But just knowing that my tribe has always had my back through this shit storm…….that’s been priceless. And healing. And what’s given me the strength to get through it. I think I might be able to get some sleep now……maybe.

By Michelle Stravitz, Co-Founder, 2Unstoppable As I moved beyond active treatment and into that murky post-treatment phase, I attended many classes and webinars on a variety of topics – chemo brain, the emotional rollercoaster of survivorship, nutrition and healthy living, emotional well-being, and more.  Do you know that every single one of them told us to exercise ?  It really amazed me. The more I looked into it, the more I realized that exercise has been shown to improve cancer outcomes in many ways.  Regular exercise has been demonstrated to significantly lower recurrence rates and increase survival rates for women with breast cancer.  Exercise helps fight so many side effects that I learned about and experienced throughout treatment, and many that I didn’t even realize until after treatment was over – including lower bone density, lost muscle mass, new feelings of anxiety (even PTSD), tight tissue in my arms and chest area, balance, notable chemo brain, potential heart damage, and lingering fatigue.  In one class I attended, I learned something about our muscles that truly shocked and mobilized me: We normally lose about 3-4 pounds of muscle mass over 10 years of aging; we lose the same amount of muscle mass in just 6 months of chemotherapy!  That fact alone got me to barre or another exercise class on many a morning! … and never mind the emotions that kicked in after treatment! The more I learned, the more I decided to make physical activity a priority in my life – finding what worked for me, but trying to address each of the different side effects.  My personal routine includes active yoga, barre, cardio exercise classes, brisk walking, and even a bit of running.  I’ve also tried belly dancing, cardio drumming, and Qigong.  And I can’t say I regretted a single time that I dragged myself out of bed or out of the house to exercise.  It has helped me tremendously, from fighting fatigue and chemo brain to building back muscle and confidence . And truly, if exercise only fought the cancer-related fatigue … that would certainly be enough.  Seriously, “you had me at fatigue.”

All too often we hear the story of breast cancer survivors whose loved ones couldn't cope with the diagnosis, treatment, surgery, radiation, side affects, scarring etc., and were so overwhelmed that they left the relationship. What follows is a brief descriptive characterizing the role of a care giver and the value it represents to the patient. This precedes the narrative of breast cancer survivor Krystle Hansley, whose relationship with her loved one fell apart due to the onset of Breast Cancer. In the future we will follow up with a more extensive Caregivers Guideline. Characteristics of care giving There are many characteristics of life as a caregiver.  The support that one provides to a cancer patient/survivor includes many of the following: emotional, physical, intellectual, financial, social, spiritual, nutritional, and motivational aspects to name just a few.  But you are never alone.  There is help and assistance everywhere.  I found the following links to be quite helpful in coming to terms with my role as a caregiver.   https://www.cancercare.org/tagged/caregiving http://www.breastcancer.org/community/acknowledging/caregivers https://www.cancer.org/treatment/caregivers.html From diagnosis onward the responsibilities associated with caregiving kick in.  There are meetings and discussions with your oncological and surgical teams.  Options and alternative courses of action are proffered and weighed. Decisions have to be made in short order so it’s best to prepare yourself ahead of time by performing as much due diligence as you can. Do your research on the various options as spelled out by your team. Once a course of action is agreed upon and plotted take particular care to stay on top of developments, I.e. scheduled appointments, pain/emotional management, medications, coordinating and communicating information to the extended caregiving family, and helping with chores. At all times be aware that you are there to assist the patient.  This isn’t about you.  Involve yourself with the patient’s emotional issues.  You do not need to be a medical professional.  Common sense and responding through the lens of caregiving should provide you with enough tools to deal with the myriad emotions that arise, such as fear and depression/sadness.  There are many support groups that you can reach out to, including hospital care groups, psychiatrists, social/media pages, # survivingbreastcancer.org . Guest Blogger Krystle Hansley, At the start of the summer in 2016, I was in the “prime” of my life. I had a prestigious research fellowship working on a HIV vaccination project at Tulane University; I was entering my last semester of graduate school, and I spent my weekends strolling down the lively streets of New Orleans. Everything was perfect, or so it seemed. Little did I know that a storm was coming. Within a few weeks, everything would change -- forever. On July 15, 2016, while sitting on the same bed where I had spent countless hours studying some of the world’s deadliest diseases, I received a phone call that would throw my whole world into disarray. That day, at the ripe age of 27, I was diagnosed breast cancer. One of my very first phone calls was to my then-boyfriend. We had been together for a year, spent holidays together, and even discussed what we would name our future children. I imagined that he was going to be my primary support system; compassionate, understanding, and an impenetrable presence. A minute into the phone conversation, he hung up on me, frustrated at the notion that I might not come home to North Carolina to be treated. That should have been my first red flag, but I had seen The Fault in Our Stars and I knew we would be okay. He even promised that he would never leave me. That means something, right? Unfortunately, this isn’t Hollywood and I wasn’t Hazel Lancaster. Our relationship started to spiral downward, and very quickly. In fact, deep, down inside I knew as soon as a month after my diagnosis that “forever” wasn’t going to happen, but I held on. -Even after he laughed at me and called me pathetic when I had trouble getting into the car a week after my 10-hour mastectomy surgery, drains distending from my sides, I held on. -Even after our fight because I had to shave my head when my hair wouldn’t stop falling out, I held on. -Even after sitting through a 5-hour chemo, crying, because a fight had gotten so bad that he shoved me into the car door, 10 minutes prior to walking through the cancer hospital door, I held on. -Even after he told me he would rather not spend New Years with me because I wouldn’t be any fun due to a chemo infusion I had a few days before, I held on. In retrospect, in the beginning, I do think he cared. However, ultimately, it was too overwhelming for him. Cancer is messy. It’s dark and scary It forces you to face your own mortality. Want to know a secret? It’s like that for you AND the people around you. It is, indeed, something that not everyone can handle and you know what? That’s okay. However, over the past two years, I’ve learned that I would rather surround myself with people who CAN handle it. I would rather be with a man who understands that I’m worth more than a phone call, two days before a surgery, telling me that he no longer wanted to be in a serious relationship because the past 6 months had been too hard on him and he was too young to be going through such a trying ordeal. I WAS worth more than that and just to be clear; YOU are worth more than that. You are worth someone who will lay on the bathroom floor with you when the chemo starts to kick in, but your nausea medications don’t. You are worth someone who will parade you around a college basketball game with your bald head like a full moon shining. You are worth someone who brings you your favorite snacks during chemo, even if you end up hating them after (it’s the thought that counts). You are worth someone who tells you they will not leave you, and means it. The situation with my ex devastated me. It broke me into a million little pieces. In fact, it thrusted me into a dark depression; one I thought I’d never get out of. But you know what? Two years later, I’m still here. Thanks to people who didn’t give up on me, and still don’t. Thanks to friends who broke into my apartment when I was so sedated on Oxy that I couldn’t get off the couch, much less communicate with anyone for 24 hours. Thanks to my family and closest friends who WILL sit on the bathroom floor with me when I think I’m dying. And last, but definitely not least, to a newfound Faith in God and the blessing that He bestowed upon me when He removed my ex from my life. I still have “those” days; those days when I wallow in self pity, but at the end of the day, I know a brand new one is coming. So, I pick myself off the floor, straighten my crown, and keep it moving. I haven’t done a health update lately so here is the latest after my appointment with my oncologist today: As I’ve previously mentioned, neither one of my oncologists want me to carry a baby due to several factors including my hormone status and BRCA mutation. My BRCA mutation not only gave me a higher chance of breast cancer, but also, a much higher chance of ovarian cancer (mine is 40%, the normal population is around 1%) Ovary removal is recommended for BRCA+ mutants. After careful consideration, I’m contemplating getting mine out sooner rather than later. Sooner being May of this year. If I decide to do this, I will be giving up the chance to ever conceive naturally. I’m asking that you all please pray for guidance because this is a huge decision and one that would change my life, forever.

By Bria Mackay, South Wales The 2016 Annual Pink Fundraising Luncheon. Pictured: Joanne’s mother Maureen Eades , Jo’s daughter Bria Mackay, Jo’s sister Elisa Eades and Leanne Reed Jo’s friend and JMBCF director. Joanne Mackay was a vibrant and caring woman who lived with nothing but love to give to those surrounding her. Her zest for life, love for others and faith in a higher power outweighed all obstacles that she faced. This is the story of her battle with breast cancer and how her vision of creating a support network for Breast Cancer patients came to fruition. In the year 2000 the Mackay family were settling back into sunny beachside life after a year of living in England. Brad Mackay had just finished a successful NRL (Rugby League) career and hung up the footy boots for a more laid-back family lifestyle on the beautiful shoreline of Stanwell Park, Australia. Joanne, a former midwife and nurse was focusing on mothering her two children Angus, 7 and Bria, 5. She was expecting her third child later that year. On the 22nd of December 2000 the family was blessed with the delivery of Tully. Things were blissful in the Mackay household until one morning whilst breastfeeding Tully, Jo noticed an unusual lump in her left breast which caused her concern and she immediately phoned to make an appointment with her local doctor. Intuition told her that something was not right. It was late February and Tully was not even nine weeks old. The doctor arranged tests to be conducted immediately and on Tuesday 6th March 2001 Jo received a phone call that would forever change the lives of the Mackay family. Joanne was diagnosed with stage IV aggressive breast cancer at the prime age of just 36 years old. “It’s now just over three weeks since I was diagnosed with breast cancer and had a mastectomy on my left breast. My first chemo session was eight days ago and since then I have felt tired, sick and lethargic. That is just the physical side! The first chemotherapy session. Pictured; Joanne Mackay with her nurse. Emotionally I cannot begin to express the roller coaster ride I have been on since that horrible Tuesday afternoon that the breast surgeon rang me with the news. One minute I’m living in my perfect world, Stanwell Park in summer with the sound of the waves crashing on the shore, the parrots squawking, the sea salt air, my two oldest children playing happily, my gorgeous husband about to become a fireman and me, mother for the third time to little angelic Tully…then a freight train from out of nowhere hits me at 100 miles an hour and completely wipes out my picture perfect world.” (exert from Joanne’s diary entry on 25th March 2001). Joanne bravely underwent a double mastectomy and had multiple rounds of chemotherapy. It was during this treatment that Jo became aware of the various struggles other breast cancer patients around her were facing. Whilst she had an abundance of support from her dedicated friends and family and was in a comfortable position financially, Joanne’s heart broke for the women she met who did not have these things. Jo began speaking about the idea of a foundation; one that would work at a very hands on level. She wanted to be able to provide women with the support that she felt so lucky to have. Jo had met single mothers who had to give up work to undergo treatment and therefore could not afford to pay their utility bills or buy groceries to provide for their children. She met one woman who had just moved countries with her husband and didn’t have her immediate family nearby for support. She met women who did not have the means to afford the gap payment of their chemotherapy. Another woman she met had to catch a public bus to and from treatment as there was no one close to her who could drive. All these things broke Joanne’s heart. She wanted to create a centre for women who needed extra support. She dreamt of the day that she would be well again so that she would be able to dedicate the rest of her life to caring for this community of women. Tragically, Joanne lost her battle on the 11th of July 2002 surrounded by her family and loved ones. The last Mackay family photo before Jo’s passing. Pictured: Joanne, Brad, Bria, Angus and baby Tully. Joanne was survived by a group of passionate women whose goal became realising her vision and so in her honour the Joanne Mackay Breast Cancer Foundation (JMBCF) was created. JMBCF, otherwise known as Jo’s Helping Hand has since been supporting the breast cancer community in New South Wales, Australia. For over sixteen years the foundation has operated entirely off kind donations and has been run solely by a small and dedicated team of volunteers. The Directors include Joanne’s mother Maureen Eades, close childhood friend Leanne Reed and as of 2019 her daughter Bria who took on the role at the age of twenty-two. JMBCF’s mission is to ease the burden placed on one’s life after the initial diagnosis of Breast Cancer. Patients are referred to the foundation through many oncologists and nurses working across four different hospitals in Sydney, Sutherland Shire and Wollongong. JMBCF offers transportation for patients, cleaning services for their homes, premium quality wigs and financial aid to cover excess treatment costs, utility bills and groceries bills etc. Until recent years the foundation provided patients with prosthetic breasts however this has since become a service covered by Medicare. The foundation has to date supported over 1,300 women and their families, averaging a total of 81 women each year since it was founded in 2002. The Foundation has always worked as a small charity allowing them to form individual relationships with each patient. Incredibly, Joanne’s Mother Maureen personally phones and writes to each patient regularly throughout their personal journey. In recent months the foundation has undergone a re-brand with the intention of gaining more awareness and expanding their network to support breast cancer patients Australia wide. The Team are working hard at launching new fundraising events and forming partnerships with other breast cancer organisations. Jo’s Helping Hand will be carried throughout decades to fulfil her inspiring legacy. For more information please visit: https://www.joannemackaybreastcancerfoundation.org/

By Kristie Konsoer Empathy : the ability to understand and share feelings with another. I recently read a blog written by an older woman who had a cancer scare that she had to deal with on her own. Her husband had passed away from cancer and she had had enough of it in her life. Her feelings are understandable. Two mammograms directed her to an ultrasound. The ultrasound triggered a biopsy. Her timeline read very much like mine did. One test after another was given with heightened urgency. Everything was fast tracked for this woman because the doctors were worried about the outcome of tests. She didn’t know how she would do cancer alone. Thankfully, this woman did not have breast cancer. Of course, I am glad it turned out this way for her. She said her experience gave her empathy for people who are alone. Hello? I’m sure this fellow writer is a lovely woman. Supporting someone through illness is hard. Losing him/her to that illness is excruciating. I do not diminish her pain because I know it’s real. I can empathize with her because I have lost my people in my life. Cancer takes too much. I am confused though why empathy needs to be directed toward people who are alone. Is aloneness somehow lesser than togetherness? Do my experiences when I spend time with friends, family, or a group of people give me empathy for people with partners? They do not. I may at times feel a little thankful to be back home and away from some of the stimulation and unwelcome opinions, but I do not have empathy for people in a relationship. It sounds absurd when the shoe is on the other foot. Somehow the comment rubbed me the wrong way. It seemed more bothersome to me that she felt empathy for people who are alone than for people who have cancer. I just kept scratching my head. It felt like pity or that someone was feeling sorry for me. I don’t want someone’s sorrow. Her remarks made me feel like she was saying, “Thank goodness I didn’t have cancer and the double whammy of being by myself!” This is more of an inner reflection than what was likely intended. I guess being on my own is a bit of a touchy subject for me, mainly of how I feel society perceives it as something less. I feel like I’m regularly defending my status. Sometimes I feel forgotten. Having cancer and being on my own really isn’t so hard. For one thing, I am reliant on myself and can organize appointments, etc. in a way that works best for me. I don’t have to check with others when I need to change my plans. I know how I feel and I don’t need to try to convince or explain those feelings to someone else. Sometimes it’s hard. Sometimes I wish I had a little more help and didn’t have to figure everything out. And I do have help. I have plenty of support. I ask for what I need. I feel connected to so many and have nurtured meaningful relationships. Technically, yes, I am doing cancer on my own, but I’m also not. It’s complicated. “Empathy is simply listening, holding space, withholding judgment, emotionally connecting and communicating that incredibly healing message of ‘You’re not alone.’” ~ Brené Brown I am not sure I’ve done all those things in my reaction to what I read. This post itself has been difficult for me to write. I have felt angry and questioned those feelings. However, it is completely okay, in fact it is fine, more than fine, for me to feel anger. I feel misrepresented. I feel there are indirect implications that are at my expense while someone else is expressing gratitude. Gratitude is not gratitude if someone (or another group) is put down in order for another individual to feel grateful. Nor is it empathy. Empathy means a lot to a person whether they have someone at their side or they are on their own. Empathy is a universal yearning we all need and we all have the capacity to give. You are putting yourself in someone else’s shoes. It still isn’t quite the same because at the end of the day you put your own shoes back on. Still . . . there are moments when you almost get it. The important part is that you try to get it. I have beloved friends who try to get it. One of my goals with this blog is to change perspectives on cancer, particularly advanced stage cancer. When I read something that feels a little, “Oh, that poor person has cancer and is alone,” I don’t like anything in that sentence because that feeling of pity permeates whatever sentiment is trying to be conveyed. It doesn’t feel good. What feels good is being welcomed to a group. I’d rather hear a compliment about something amazing I accomplished instead of a question on whether I went with anyone while achieving it. It feels good to be appreciated for my other qualities. It feels good to be included in things. If I’m unable to do something, then I may need to pass, but I appreciate being included. I like it when people remember things about me and respect my thoughts and opinions. I like it a lot when I’m not constantly asked about my health and truly treated like one of the gang. A small bit of thoughtfulness goes a long ways. It is how I believe we all can treat one another respectfully and compassionately. Empathy in action is a lifestyle choice. Taken at the UW-Arboretum in Madison, WI. It’s possible I’m confusing empathy with sympathy, but I don’t think I am. In fact, I think some other people are. I certainly don’t want anyone’s sympathy or sorrow. It belittles and demeans if directed at me because I’m living with cancer. I want an even playing field. Don’t give me something or take something from me because of my health. Don’t give me something or take something from me because I’m single. I didn’t ask for your sorrow or pity. I’ve asked for your encouragement, support, and friendship. These are the things I offer. There is something else you can give me: caramel. If someone were to offer me a caramel, I would not say no. Really good caramels are an entirely different story. It just might be an edible form of empathy. Empathy is feeling as sad for a friend as if the event were happening to you. It’s understanding your friend is in a lot of emotional or physical pain. Empathy is understanding a perspective that’s the polar opposite of yours. Parents and teachers demonstrate empathy every time they know that something that isn’t a big deal at all really is a huge deal to a child. You show empathy to me when you understand that I may cancel plans, not feel one hundred percent, and don’t ask me a laundry list of questions. It means a lot to me when you share something hard in your life rather than me always explaining my latest hurdle that I try to embellish with a little humor thrown in for good measure. Empathy is not making comments along the lines of “It’s too bad you had to get cancer.” Yeah, I just don’t know what I was thinking when I was in the cancer store. It isn’t empathetic to tell someone what he/she feels. Neither is telling someone what he/she needs to do to fix what is deemed not right (health, job, loss, etc.). Empathy is not putting someone down or saying things could be worse or that he/she should feel grateful. The words “at least” aren’t used at all. Please don’t tell me to live life to the fullest because tomorrow I could get hit by a bus. What many people don’t understand is that I’m running from that stupid bus every day. These things seem obvious to me, but I’ve heard them all. Perhaps the intention isn’t to show empathy, but to show something far less kind. I can’t figure it out. And empathy definitely is not knowing what it might be like to have cancer and be alone because you had a scare and everything turned out just fine. You put your own shoes back on and walked on. Empathy is something we all need and we all have the ability to give. At best, we understand what it’s like to be scared, perhaps terrified about our health and our future. We understand all the “what ifs” that run wild in our thoughts. We understand that disease can be a very lonely place to live. We can relate to one another that our upsetting news, event, or circumstance may be completely different from another person’s struggle, but that they are the same in that they are unsettling, frightening, and possibly very lonely feelings. We understand people are doing the best they can with what they have. Empathy connects us to one another. Through empathy we can share with and support one another. I can empathize with those feelings. I am not alone. You are not alone either. Consider replying: Where have you seen empathy alive and well in your life? How do you best handle situations when someone is not empathetic? Here is the link to my site: https://www.kristiekonsoer.com

By Dr. Carole Weaver In my early 60's, with a lifetime of adventure in travel, single parenting and fund-raising--and a few side trips into musical comedy, I was ready for a new exciting chapter. My kids grown and gone to Hollywood, I aimed at Broadway, or at least auditions for bit parts (the older woman—an extra decked out in colorful rags in Sweeny Todd ). Wham! Fate however dealt me two surprises: a new boyfriend-- an art appraiser--and... breast cancer. Complications ensued (read about it in my memoir, SIDE EFFECTS: The Art of Surviving Cancer ) especially with the cancer, but, hey, a Cinderella romance ensued even for this aging feminist. One problem: It takes a village, as we all know, to help a cancer patient through treatment. But my village looked more like a ghost town. Family was 3000 miles away. Boyfriend suffered sick people as energy drains. Shrink only interested in "authenticity," not pain. And girlfriends, while valiant, soon became exhausted with the regimen of driving, shopping, calling and, well, caring. A few pieces of art stepped into the breach. The “side effect” I discovered as an antidote to an e-coli infection in the operating room, a nasty reaction to chemo, and multiple surgeries, was how a handful of beautiful objects distracted, comforted, delighted, and ultimately gave me a deep healing perspective which got me through my ordeal. I was no art expert, no art major; didn’t even especially like museums for more than 45 minute visits. I just let my own frame of mind (pun intended) move me toward a statue, a painting, a piece of music, even an object artistically sewn. Most of the individual pieces had something to do with the stage of my treatment. For example, when I was going through chemo, my appetite was horrible. I could barely get anything down. I dreamed of eating clouds. Then I discovered this large Turkish plate-- a reproduction of a fifteenth century ceremonial ceramic. It was gorgeous with the special calligraphy dedicated to the Sultan and his distinctive Tughrah, his signature in the middle. This plate was never meant to be laden with food. It was strictly an object of magnificent craft to be looked at and appreciated. I loved that plate during those days when the Nausea Imp waited next to my cheek. It was the opposite to what I saw at work when people would bring in gigantic sandwiches for lunch; or at the Chinese buffet, the food dangling over the over-burdened plates. The Turkish plate told me my aversion to food was rewarded with grace, with the masterly strokes of the anonymous hands that filled the background of the Tughrah like a movie set or a musical accompaniment I could not hear. Basically, this is the way it worked: If I saw something in my boyfriend’s house that I liked and came back to it to stare, hold it in my hand, and wonder at its creation, I stayed with it for a while. It made me happy. Eventually, I would understand that it did more than that to my physiology. I learned that art can heal. The Tughra of Mehmed the Second, 1432-1481 Neil MacGregor calls the Tughra “a badge of state, a stamp of authority, and a work of the highest art. ” From A History of the World in 100 Objects, p. 458 (Viking, 2011).

Mindfulness: A mental state achieved by focusing one's awareness on the present moment. By guest blogger, Michelle Stravitz from 2Unstoppable My cancer diagnosis, and the months and years that followed, have taught me the incredible value of mindfulness, particularly for combating the emotional rollercoaster of cancer treatment and survivorship . In many ways, it has saved me and restored my emotional well-being! Exercise – in almost any form – is a great way to achieve mindfulness, and thus it can help with the anxiety, depression, and fatigue that often accompany a cancer diagnosis. And, as a bonus, physical activity combats so many side effects – for me it has helped loosen up tight tissue resulting from radiation and surgery, increase bone density and muscle mass lost during chemotherapy, and improve balance and brain fog caused by chemo and worry. I have found that I can often achieve a state of mindfulness through exercise, whether I’m focusing on form and muscles during a barre class, on rhythm and dance steps in a cardio exercise class, or, most effectively, on flow and breath in a yoga class. Staying ON MY MAT is a lesson I have learned after many years of yoga practice, and most of the time I can forget about the grocery list, appointments, or fear of recurrence (!) and stay in the moment when I’m on my mat . I can also achieve mindful meditation while walking, by focusing only on putting one foot in front of the other. One-step-at-a-time provides an ideal metaphor for the one-day-at-a-time and one-phase-at-a-time approach to cancer treatment. I can even find my mindful state when jogging. The thump-thump of my feet hitting the pavement keeps my mind only on the step ahead of me. And in that way my mat is my-feet-hitting-the-pavement, and nothing else. “Cancer is known to cause high levels of anxiety and depression in patients and survivors, and mindfulness is a proven method for combatting these emotional states.” What does this really mean? Anxiety is defined as worrying about the future, and it’s hard not to do this when you’re thinking about where a cancer diagnosis might take you. Depression is associated with looking back at the past, and it’s also hard not to go there when wondering what caused the cancer in the first place, reliving when it was discovered, and grieving for what life was like BEFORE. Mindfulness reminds us to stay in the present moment … on our mats, on the pavement, or in our breath, where we are still very much alive, taking care of our bodies, doing everything we can to improve our outcomes and our quality of life … right now . So … when your mind wanders ahead of you, or strays behind you … bring it back to your mat , whatever that mat looks like for you. Find your mat … your favorite form of movement … and stay with me, right here, right now. I’ll meet you there.

By Jeff Neurman https://itsinmyblood.blog/ I recently celebrated my sixth anniversary of having been diagnosed with cancer by not having yet died from it. Similarly, it is a little less than a year since I, in an effort to accomplish the not dying part, subjected myself to months of chemotherapy, from which I also did not die (but experienced a couple of episodes when that looked like the preferable outcome). And while I am of course immeasurably grateful to still be vertical, I must admit that I think the years of living with cancer and the ramifications of the treatment for it are starting to grate on me. In the last couple of weeks, I have written blog posts in this space that I believe reveal my increasing annoyance with cancer. The first, On (Cancer) Language ( https://itsinmyblood.blog/2019/07/11/on-cancer-language/ ), was a bit of rhetorical flourish for the uninformed that seem to inhabit every cancer-ites orb. Similarly, but with a bit more bite, last time out I wrote about things not to say to those of us with cancer. It occurred to me that merely telling people what was okay to say was not going to be adequate. Let’s face it: Some people just need practical advice. Consequently, I posted Silence Is Golden ( https://itsinmyblood.blog/2019/07/17/silence-is-golden/ ). Unfortunately, not everyone seems to read my vital blog, including certain people who are close to me. (When I say close, I may or may not mean that they are blood relatives. Hint, hint, wink, wink.) This is not necessarily their fault as I am not confident that some of these unnamed people know how to actually use a computer. Technological savvy is not a prerequisite to be in my circle, as I don’t hold others to a standard that I cannot maintain for myself. I only realized belatedly, however, that my essential posts above were not getting through to all of the right people when I received a message from one such person. This message, which arrived in the form of an email (so I guess someone does know how to use a computer after all), was an unsolicited missive directing – not suggesting or even requesting – that I look into some unheard of doctor. Helpfully, the instructions provided not only the doctor’s website but his phone number, which I quickly realized was not a U.S. phone number. I have nothing against non-U.S. doctors whatsoever, but I happen to be based in the United States. So there is some element of a convenience factor at play. The message went on to “inform” me that this doctor is really more of a consultant. I was puzzled by that terminology. What does that entail? Does that mean the doctor actually just charges one for thinking about one’s issue but actually does nothing? You know, consulting. Although I feel as though I already spend way too much time with doctors (U.S.-based) as it is, I do like a bit more of a hands-on approach. I think an occasional lymph node check or a look at my lingual tonsils (which is really just another form of lymph node check), although physically awkward, is probably a good idea. Of course, the directive did not end with the instructions to make my international phone call. I was also informed that this doctor’s big thing is “diet.” I realize this is a touchy subject with many cancer sufferers. Some people swear by a diet change while others think it is a red herring (and I am pretty sure herring is a fatty fish and thus not on the approved diet). I must confess I am a bit skeptical that merely by changing my dietary habits I am miraculously going to be cured of my otherwise incurable cancer. And while I am not the world’s best eater, I already eat a pretty healthy diet. Tonight, in fact, I think we will have tofu on the grill. Of course, too much soy can apparently cause cancer as can grilling, so maybe I am not too healthy after all. Nonetheless, if diet were the key to being cancer-free, I think I eat well enough that I should be. But, as you may have noted, I am not. If I were, I would have much less to blog about. Finally, perhaps to further attempt to persuade me of the prudence of this approach, the email sender informed me that a good friend is a dietitian who could create a diet for me. I do not doubt the motives of this undisclosed directive giver, but I can’t help but wonder if s/he thought this could be a win-win: I can cure Jeff of cancer and get my friend a new client! Joy! What my unsolicited message writer seems to fail to notice is that I am already surrounded by countless people who do actually know what they are doing. This group includes MDs, DOs, PAs, NPs, RNs, LPNs, MAs, RDs, and the occasional PhD and LCSW, the last for when I have had too much of dealing with all of the prior. Each of the above has his or her place, even if the occasional MA did not know my right arm from my left – I get it, it’s confusing because it is backwards when facing the patient. Like looking in a mirror and having a cancer patient staring back at you. Do these people have all of the answers? No, sadly. But have they collectively put me into remission for the time being? Yes, happily. Thus, when someone close to me comes along and acts as if s/he has a solution that I did not think of that would be so much better than what I have done already (note also that these suggestions might have been more useful before I underwent treatment), it is a most unwelcome message. As this person well knows, my wife is a doctor, we live in New York where there are many specialists in my type of cancer and, surprising as this may seem, we actually did give some thought to my options before deciding on them. And as delicious as a diet comprised solely of turmeric-coated non-GMO kale and green tea with organic Meyer lemon sounds, I am pretty sure that if I had used that as my silver bullet for cancer it would have had the same impact on me as any other bullet. It may be hard for those without cancer to understand since, of course, people who care about you only want to be helpful. And one can’t fault them for that, nor should one. Certainly this particular person loves me and wants nothing but the best for me. But before firing off half-baked schemes involving international doctors and facile fixes, consider perhaps how much thought has already gone into getting me to this point. If you are not sure, then perhaps just keep it to yourself. As I said last week, silence is golden.