I chose today, halfway through this breast cancer awareness month, to highlight those badass women that Adiba chose to highlight thus far during her 100 days of MBC. Yes, I should disclose that my picture is amongst the ones below. Each of us who were highlighted picked an issue near and dear to our hearts to showcase and you can learn a little more about our stories in the captions below the pictures.
Why do this?
I’ve been sharing facts and some of my perspectives thus far and I think it’s important to see the faces of the people and families who are directly affected by this insidious disease. We come from all places, ages, races, professions; metastatic breast cancer is a true equalizer.
Read on and celebrate these women who are turning a terminal diagnosis into a rallying cry for action, for change, for advocacy, and for LIVING.
Women of color diagnosed with breast cancer have a 40% higher mortality rate. Health disparities such as these are a result of systemic racism and we need to focus on making healthcare equitable for all, says #metssister Chawnte’ Randall. Chawnte’ 43, Army Veteran and federal employee. First diagnosed with early stage Triple Negative Breast Cancer (TNBC) in 2017 that progressed to stage 4, Metastatic TNBC in April 2019. Chawnte’ is a hero and champion for mbc, she advocates for young women and women of color diagnosed with breast cancer. She is a LBBC Young Advocate Alum, Tigerlily Angel Advocate and co-host of Our MBC Life podcast. Listen to her share her journey together with other champions shorturl.at/swEHK, link in bio Chawnte’, thank you for all you do in the mbc community and for sharing your story Black women are more likely to be diagnosed with breast cancer at younger ages compared to White women, and with the more aggressive subtype, TNBC. About 30% are younger than 50. More advanced stage at diagnosis among black women has been largely attributed to issues related to access to high-quality health care, including fewer screening mammograms, lack of timely follow-up of abnormal results, and receipt of health care at lower resourced or non accredited facilities. Racial disparities are typically larger when effective treatment is available, highlighting the influence of access to care.
Meet #metssister Tami Eagle Bowling. She spent twenty years selling advertising for well-known brands, such as Cosmopolitan, Marie Claire, Teen Vogue and Bon Appetit. She is the mother of 2 young girls, ages 10 and 7. When they were born, she never imagined she would have to wonder daily whether she would be alive to see them grow up. In 2015, at the age of 41, with no history of breast cancer in her family, she was diagnosed de novo (from the start) with metastatic breast cancer after a routine mammogram in 2015. At first, the doctors thought it was early stage, but after an MRI, 3 breast biopsies, PET/CT, liver MRI and 2 liver biopsies, the MBC finding was conclusive. This shocking and incurable diagnosis changed her life in an instant. “Living with stage IV cancer has inspired me to live life in a very meaningful way”. Tami has served as a consumer reviewer for the Department of Defense (DOD) Breast Cancer Research Program (BCRP) for the past 2 years, helping to decide which grants would have the most impact on the metastatic community. In FY2020, Congress appropriated $150 million to BCRP. “I was excited to serve on a panel as a consumer reviewer along with scientists and doctors to determine which grants would have the most impact, if funded. In an ideal world, I wanted every grant to be funded because all it takes is one smart idea to make a grand difference. More funding is desperately needed so that a higher percentage of the grants can be funded. That is why I use my voice to advocate.” Tami encourages anyone interested in learning more about MBC to join her facebook group @METAvivorsofNJ Thank you for being a hero for the mbc community Tami
It has been previously thought that patient reluctance was behind this. A study led by researchers from the Fred Hutchinson Cancer Research Center suggest that patient choice is not the main reason to low participation rates. Of the 9,000 cancer patients involved in the study, over half didn’t have a trial available to them. 25% were deemed ineligible for the trial they applied for, but when patients were offered the chance to participate in a trial, about half did. Clinical trials need to be more easily accessible. https://bit.ly/3kGJgwi Meet #metssister Barbara Bigelow, a licensed school psychologist that dedicated her life for 33 years to working with adolescents whom she loved. She’s been married to the love of her life, Tim, for 37 years and they have two daughters. In 2002, at the age of 44, she was diagnosed with early stage breast cancer after her two older sisters had also been diagnosed. (No, they did not have the genetic mutation). Shortly after she finished treatment, her older sister, Mary Lou, died of metastatic breast cancer – only 6 weeks after it metastasized to her brain. In 2015, 13 years after her early stage diagnosis, Barbara was also diagnosed stage 4, metastatic breast cancer. Over the course of 9 months, several treatments failed. A second biopsy showed that her cancer had mutated from being hormone positive to Triple Negative, the most aggressive subtype. With that, she signed up for a clinical trial combining chemotherapy with immunotherapy. After three months, the clinical trial caused complete organ failure. In a last-ditch effort to save her, she was placed in a medically induced coma for days and given a less than 10% chance of surviving. Steroids, at a massive dose, were administered, as well as hemodialysis. Miraculously it worked. After a month in the hospital and a 42-pound weight loss, she was transferred to an acute rehab facility for another month so she could re-learn how to walk, swallow, sit up, use her hands, etc. Seven weeks later, she went home, and currently, she is NED (No Evidence of Disease) and treatment free, and has been for over 4.5 years—she is truly a unicorn in the mbc community! Thank you for sharing your incredible story Barbara, and for all the successful campaigns you’ve done for the metastatic breast cancer community through your board role at METAvivor. You are a hero to all of us! “It is hard to have a consistent voice in the struggle against MBC when our leaders die week after week. I find it difficult to carry on sometimes knowing my time here is short and there is so much to do. Despite this, I believe that love always shows up, kindness matters” says Barbara.
Meet non-binary LGBTQ+ mets friend Theo Kresack. They were diagnosed at 30 years old in June 2019 as a recurrence from stage 2, four years earlier. “I had a constant cough that wouldn’t go away and a CT scan showed swollen neck nodes. Got a biopsy which came back positive for cancer. PET scan revealed multiple metastasis in other areas too.” Theo has been happily married to their wife for almost 5 years. “Being diagnosed with metastatic breast cancer at 30 years old is lonely enough, but being a non-binary LGBTQ+ person with the disease is even lonelier. MBC is seen as a “women’s disease” (men also get MBC, but are less seen) and marginalize people like me who are neither woman nor man. We don’t fit into any category except as a “young cancer patient.” There is no research and even less understanding. That needs to change.” Thank you Theo for educating me and us, and sharing the challenges you have to face as a non-binary LGBTQ+ person with metastatic breast cancer. Learn more by reading this recommended article: https://www.google.com/…/why-breast-cancer-awareness…
Let’s talk GUILT. It’s something us #metastaticbreastcancer patients feel all the time. “I’ve felt guilt for turning my husband into a caregiver, guilt for causing anguish for my aging parents and my grown children and guilt for being alive at 67 when fellow MBC friends have died in their 20’s and 30’s.” Says #metssister Darylene Finkelstein.Dar, a retired Marketing Specialist, was first diagnosed with Stage II HR+ HER2- Breast Cancer when she was 53. Thirteen years later, an early morning rush to the ER for chest pain ended in a diagnosis of Metastic Breast Cancer that had spread to almost all of her bones. Her vision of an easy going retirement filled with extensive travels across the country with her husband in their RV had suddenly changed. As the first few months after her diagnosis passed, she began to feel guilt as she read on Facebook of the stories of young women whose lives being altered significantly and ending way to early. She knew she had to do something to bring Joy to these lives so she began a Facebook Group Choose to Live with Joy and later on Instagram @choosetolivewithjoy. There are several groups where we can learn from each other how to navigate the terrible intricacies that is MBC. But she wanted to create a space full of light and life; where it is OK to laugh at the things that happen in our MBC life and also create a place where anyone, with or without, MBC can find a way to learn how to create Joy in their life, no matter what the external circumstances. Dar also created The Charlotte Area MBC Support Group – which meets twice a month(virtually during covid). She is the South Carolina Captain for Metavivor’s Stampede, volunteer on S.H.A.R.E.’s TalkMETS helpline, and is an Ambassador for Komen Charlotte. She still has guilt on occasion, but she says “My mission to help with MBC research funding, and provide support to my fellow mets sisters have been a silver lining in a difficult time.”Dar, thank you for bringing joy and support to our mbc community, you are a hero and champion!
Day 82 /100 Meet mets sister Danielle Thurston. She was diagnosed with MBC at age 35. “What disturbs me the most about living with MBC is being struck down in the prime of my life. I have so much more living left to do. I want to raise my children. I want to pursue my professional ambitions. I want a quality of life. I am not ready to die yet, and all that keeps me alive is a series of gruesome treatments strung together. We deserve better. We demand better.” says Danielle. I love reading her wigsandthingsblog, she’s such a creative writer. Here is one of her posts: The Abyss My first encounter with the monster, cancer, shook me to my core. I had escaped its grip, but lived in fear it would always come back for me. Still, I had a taste of freedom. Of normalcy. It was beautiful. Upon learning the monster was back, inside me, and there was a significant chance it would take up permanent residence in my precious body forever, it made me realize I would never be free of it. Even if I, by some miracle, became truly “no evidence of disease”, I would have my body analyzed for the rest of my life, my blood, my bones, my cells. It will be always given medications and be harassed by side effects. Everyday. For life. Every part of my body under a microscope. The complete loss of my autonomy. Not just for a season, not just until treatment ends. Treatment will never end. I will be deemed a “cancer patient” forever. This is gazing into the abyss, and it gazing back at me. We two are forever intertwined. The monster and I. Perhaps this was my destiny. My fate. And I can choose to be swallowed whole by it, to cry in a heap on the floor about how unfortunate I am. How ill-fated. Or I can choose to pick myself up, and awaken the sleeping warrior. I can choose to realize that every hardship, every difficulty I have ever experienced has been preparing me for this moment. Physically. Mentally. Emotionally. Spiritually. I am strong. That does not mean the others who came before me were not strong. But I cannot think about their story. I can only think about my own. I am stronger than the monster. I am stronger than the abyss. knowmbc #donatetoresearch METAvivor Research and Support Inc.
Day 85 /100 Pregnancy-associated breast cancer (PABC) is defined as breast cancer diagnosed during pregnancy or in the first postpartum year. Breast cancer affects approximately 1 in 3000 pregnant women (U.S.). The average age of women with PABC is 32 to 38 years. As more women are delaying childbearing, and as breast cancer rates continue to rise, more diagnoses of PABC are anticipated. Source: NCBI Mets sister Libby talks about her experience with being diagnosed with PABC (and one year later metastatic breast cancer) shortly after delivering her baby girl Violet. The day that Violet came into this world was the best day of my life. Unfortunately, it was quickly followed by the worst day of my life. I was diagnosed with breast cancer at 34 years old, Violet was 7 months old at the time. After my early stage diagnosis, I fell into a deep depression about recurrence and death. I was brought to the emergency room several times for suicidal thoughts. Eventually I wound up in the inpatient psych ward for a month. I found this very healing, as I was separated from Facebook, and my cellphone and finally was able to think about something other than my repetitive thoughts about my death. I was put on an anti-depressant, anti-anxiety pill and given pills to help me sleep. I was finally able to start to heal, begin caring for my daughter full time again and planning a return to work. Driven by my high anxiety after my early stage diagnosis I had requested a PET scan from my doctor. There are no follow up scans after a breast cancer diagnosis, my doctor said. I wanted to know what was going on in my body so I insisted. The scan spotted something on my sacrum – they thought it was an injury. However after having a bone scan and an x-ray it was confirmed that I had stage 4, metastatic breast cancer. My worst fears had come true; I am going to die from this. I am so angry that I didn’t receive screening that could have possibly caught my cancer before it spread (especially during pregnancy). Women younger than 50 in Canada (where Libby is from, 40 in the U.S.) are being failed by the lack of screening. I am angry that I will most likely not see my little girl grow up. I have lost 5 young friends, young moms since diagnosis. It is not fair! Read Libby’s whole story here: http://www.metamorphosismbc.org/libby-story metastaticbreastcancer #breastcancer #knowmbc #mbcandme #thinkbeyondpink #stageivneedsmore #donatetoresearch METAvivor Research and Support Inc. #METAvivor #wedontwannadieyoung
Meet mets sister Abigail, a 41 year old mother of two, a lawyer, and a bad ass patient advocate. She goes above and beyond to make sure MBC is in focus, and that research becomes a priority. She had her own law firm with 20+ employees when she was diagnosed. She closed it to spend time with her boys. Now she handles legal issues through her non profit for stage iv patients – Connect IV Legal Services Inc. Thank you for all you do for us #metavivors Abigail, you’re a hero. This is her story… At the ripe old age of 38, while tandem breastfeeding my two boys, then 1 and 3, I felt a lump and, after a rather torturous process, I learned that I had Stage IV metastatic breast cancer. It was 2017, a year which will forever be known as the year of chemo, four (4) surgeries, and the start of a cancer experience that has become an all consuming effort to stay ahead of the rapidly mutating cancer cells. We also discovered that the ATM germline mutation is quite significant in my family and was likely the cause of my advanced diagnosis. As soon as I’d recovered from chemo and surgeons, I started Ibrance and Letrozole. That combination kept me stable for 2 years. Then, I switched to Piqray after confirming the somatic mutation, PIKC3A. After 6 months on piqray, a pet scan showed that the cancer was becoming more active, a harbinger of progression. Instead of changing to a third line of treatment, my oncologist and I decided to add Kisquali to my regimen. I’ve now been on these two different targeted therapies at the same time for nearly 6 months and it appears to be working well. My life is now focused around my family, doctor’s appointments, cancer research, advocacy efforts, helping other cancer-havers and making time for all of the amazing people in my life. As my dear friend, Emily Garnett, used to say about the MBC community, “It’s the worst club with the best people.” I believe that. Follow Abigail on her blog https://nohalfmeasures.blog/my-story/
And now you know more about some women living with MBC, those who have taken the worst possible thing that has happened to them and turned that tragedy into action.