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- Social Media Manager
Position: Social Media Manager - Marketing and Community (Instagram, Facebook, Twitter) Hours per week: 10-20, Position is remote, unpaid, part-time. Job Summary: Our growing non-profit, which is at the intersection of health care, technology, and customer service, would like to bring on a Social Media Manager. The successful candidate will be a driven, ambitious, creative, individual looking to develop and execute a digital marketing strategy with the end goal of increasing followers and engagement across multichannel platforms. We offer a flexible schedule, extensive training, and mentorship, as well as the opportunity to experience the industry from the inside and valuable work experience. Responsibilities and Duties: · Responsible for managing the organizations online social media accounts · Responsible for growing followers, engagement, and collecting email addresses. · Engage with health care professionals and those diagnosed with breast cancer via the various platforms platform · Engage and develop community via our online networks · Promote webinars, events and programs · Solicit blogs, stories, and content for our website and newsletter · Enhance our digital presence on social media while maintaining our brand and voice · Create graphics and content Team Player: · Take on additional tasks and responsibility as needed Qualifications and Skills: · Must be passionate about our cause and our work Must be reliable and able to maintain confidentiality Must have strong public speaking skills and enjoy meeting new people Excellent written and verbal communication skills Self-directed and able to work without supervision Energetic and eager to tackle new projects and ideas · Must be 18 years or older How to Apply Please send cover letter, resume and three references to William@survivingbreastcancer.org
- Content Writer
Position: Content Writer Hours per week: 10-20, position is remote, unpaid, part-time. Job Summary: Our growing non-profit, which is at the intersection of health care, technology, and customer service, would like to bring on a Content Writer Intern for a semester with the option of extending. The successful candidate be a driven, ambitious, creative, individual looking to learn on the job and develop skills to excel and create a career in communications, digital media, content marketing, advocacy, and public health. We offer a flexible schedule working remotely, extensive training, and mentorship, as well as the opportunity to experience the industry from the inside while gaining valuable work experience. Responsibilities and Duties: · Responsible for researching health care topics, gathering content and writing articles for publication on our website and for distribution in our weekly newsletter. · Research trending and hot topics related to breast cancer, treatment, and advocacy · Create content for feature landing pages · Collaborate with social media teams to disseminate content and grow survivingbreastcancer.org’s brand and subscriber list. Team Player: · Take on additional tasks and responsibility as needed Qualifications and Skills: · Must enjoy writing and have strong writing, communication and proof reading skills. · Must be passionate about our cause and our work Must be reliable and able to maintain confidentiality · Enthusiastic about health care, advocacy, and promoting breast cancer awareness Self-directed and able to work without supervision Energetic and eager to tackle new projects and ideas · Must be 18 years or older How to Apply Please send cover letter, resume and writing sample to William@survivingbreastcancer.org
- Podcast Communications Intern
Position: Podcast Communications Intern (Breast Cancer Conversations Podcast) Hours per week: 10-20, Position is remote, unpaid, part-time. Job Summary: Our growing non-profit, which is at the intersection of health care, technology, and customer service, would like to bring on a Marketing and Communication’s Intern. The successful candidate will be a driven, ambitious, creative, individual looking to learn on the job and develop skills to excel and create a career in communications, digital media, content marketing, advocacy and public health. We offer a flexible schedule working remotely, extensive training, and mentorship, as well as the opportunity to experience the industry from the inside and valuable work experience. Responsibilities and Duties: · Responsible for the post production of our podcasts which include: o Developing and writing the show notes for weekly episodes o Reviewing and editing transcriptions of weekly podcast episodes o Uploading and publishing podcasts o Creating and disseminating soundbites o Creating graphics and cover art for each episode o Incorporating Search Engine Optimization strategies to ensure our content gets found on google · Collaborate with other interns and volunteers to ensure the podcasts are published to the website, queued up for the weekly newsletter, and promoted on social media outlets Team Player: · Take on additional tasks and responsibility as needed Qualifications and Skills: · Must enjoy writing and have strong writing, communication and proof reading skills. · Must be passionate about our cause and our work Must be reliable, meet weekly deadlines, and able to maintain confidentiality · Enthusiastic about health care, advocacy, and promoting breast cancer awareness Self-directed and able to work without supervision Energetic and eager to tackle new projects and ideas · Must be 18 years or older How to Apply Please send cover letter, resume and three references to William@survivingbreastcancer.org
- Video Editing & Communications Intern
Position: Video Editing & Communications Intern (YouTube) Hours per week: Minimum of 10 hours per week Job Summary: Our growing non-profit, which is at the intersection of health care, technology, and customer service, would like to bring on a Marketing and Communication’s Intern for a semester with the option for renewal. The successful candidate will be a driven, ambitious, creative, individual looking to learn on the job and develop skills to excel and create a career in communications, digital media, content marketing, advocacy and public health. We offer a flexible schedule working remotely, extensive training, and mentorship, as well as the opportunity to experience the industry from the inside and valuable work experience. Responsibilities and Duties: · Responsible for the post production of our webinar · Cut, edit, and create videos for our YouTube channel. · Developing and writing the show notes for weekly webinars · Support the growth strategy and community building strategy of our YouTube channel · Creating and disseminating soundbites · Incorporating Search Engine Optimization strategies to ensure our content gets found on google and on YouTube · Collaborate with other interns and volunteers to ensure the Webinars are published to the website, queued up for the weekly newsletter, and promoted on social media outlets Team Player: · Take on additional tasks and responsibility as needed Qualifications and Skills: · Must enjoy writing and have strong writing, communication and proof reading skills. · Must have a basic background in video editing · Must be passionate about our cause and our work Must be reliable, meet weekly deadlines, and able to maintain confidentiality · Enthusiastic about health care, advocacy, and promoting breast cancer awareness Self-directed and able to work without supervision Energetic and eager to tackle new projects and ideas · Must be 18 years or older How to Apply Please send cover letter, resume and three references to William@survivingbreastcancer.org Position is remote, unpaid, part-time.
- Program Manager
Position: Program Manager Hours per week: 10-20 Position is remote, unpaid, part-time. Job Summary: Our growing non-profit, which is at the intersection of health care, technology, and customer service, would like to bring on a Program Manager. The successful candidate will be a driven, ambitious, creative, individual looking to learn on the job and develop skills to excel and create a career in community engagement, sales, healthcare, and advocacy. We offer a flexible schedule, extensive training, and mentorship, as well as the opportunity to experience the industry from the inside and valuable work experience. Responsibilities and Duties: · Responsible for the overall growth and sustainability of a portfolio of programs · Establish partnerships with national hospitals and community health centers · Create and disseminate educational content, brochures, and flyers · Promote program events and webinars with the goal of increasing participation and engagement. Team Player: · Take on additional tasks and responsibility as needed Qualifications and Skills: · Must be passionate about our cause and our work Must be reliable and able to maintain confidentiality Must have strong public speaking skills and enjoy meeting new people Excellent written and verbal communication skills Self-directed and able to work without supervision Energetic and eager to tackle new projects and ideas · Must be 18 years or older How to Apply Please send cover letter, resume and three references to William@survivingbreastcancer.org
- Program Manager - Community Engagement
Position: Program Manager Hours per week: 10-20 Position is remote, unpaid, part-time. Job Summary: Our growing non-profit, which is at the intersection of health care, technology, and customer service, would like to bring on a Program Manager. The successful candidate will be a driven, ambitious, creative, individual looking to learn on the job and develop skills to excel and create a career in community engagement, sales, healthcare, and advocacy. We offer a flexible schedule, extensive training, and mentorship, as well as the opportunity to experience the industry from the inside and valuable work experience. Responsibilities and Duties: · Responsible for the growth and sustainability our online communities · Engage with community members and foster a supportive online network Team Player: · Take on additional tasks and responsibility as needed Qualifications and Skills: · Must be passionate about our cause and our work Must be reliable and able to maintain confidentiality Must have strong public speaking skills and enjoy meeting new people Excellent written and verbal communication skills Self-directed and able to work without supervision Energetic and eager to tackle new projects and ideas · Must be 18 years or older How to Apply Please send cover letter, resume and three references to William@survivingbreastcancer.org
- Publications - Marketing & Communications Intern
Position: Publications - Marketing & Communications Intern Weekly Newsletters and #FeatureFridays Hours per week: 10-20, position is remote, unpaid, part-time. Job Summary: Our growing non-profit, which is at the intersection of health care, technology, and customer service, would like to bring on a Marketing and Communication’s Intern for a semester with the option of extending. The successful candidate be a driven, ambitious, creative, individual looking to learn on the job and develop skills to excel and create a career in communications, digital media, content marketing, advocacy and public health, and business development. We offer a flexible schedule working remotely, extensive training, and mentorship, as well as the opportunity to experience the industry from the inside while gaining valuable work experience. Responsibilities and Duties: Digital Publications · Responsible for researching topics, gathering content, writing, and distribution of our weekly Friday Feature and Monday Newsletters considering our client’s needs, interests, and hot topics in the health care/breast cancer field. · Responsible for the solicitation, maintenance and delivery of our blog, and breast cancer survivor stories series. · Assist with capturing and analyzing email campaign metrics · Collaborate with social media teams to disseminate content and grow survivingbreastcancer.org’s brand and subscriber list. Team Player: · Take on additional tasks and responsibility as needed Qualifications and Skills: · Must enjoy writing and have strong writing, communication and proof reading skills. · Must be passionate about our cause and our work Must be reliable and able to maintain confidentiality · Enthusiastic about health care, advocacy, and promoting breast cancer awareness Self-directed and able to work without supervision Energetic and eager to tackle new projects and ideas · Must be 18 years or older How to Apply Please send cover letter, resume and writing sample to William@survivingbreastcancer.org
- Images of Self
By Veronica Novy When you look at me What do you see? If you could see my inner being what do you think it would look like? I am a fire, I am a flame There has been a torch within me that keeps my fire burning When I think of me, I will tell you what I see I will tell you what I want to be I am lovely to my own eyes I have journeyed to a new level of existence I am beauty, I am desire I can light the fire and put out the flame I am a woman who has struggled for centuries In a world full of images My beauty is self contained and has been locked up for centuries Silently waiting to erupt and escape to freedom The image revealed to the world is sheer strength, noble and righteous The woman that I wish to be in fact in reality has always been here She now seeks an avenue, a pathway, a road that will lead her to the truth Today, this woman is unafraid yet she still trembles with an unknown fear Give her a reason to go on and questions her own existence as well as the norms of culture and society And images What was yesterday, in fact is not true today Yesterdays truth will not lead us to tomorrow The whispers, the echoes, the dreams, and the voices of my sisters past and present Are beggin’ you to come listen And make new choices for tomorrow The woman today is ready for the challenge of today and tomorrow The image of a Woman My image is Black Strong Real Undeniable and beautiful I am free What you see What you feel What you sense what you hear are only fragments which encompass her whole body The image is a total reflection And that reflection is me!!!
- Random Thoughts
By Veronica Novy Here Alone I Sit In My Room Pondering the thoughts of yesterday And wondering how I have existed On the verge of life for so long Here I sit waiting Asking for someone to hear my voice Here I sit and there is nothing left To say to anyone anymore Here Alone I Sit Thinking about my own existence And about survival, my survival As I cling to a world during peacetime But somehow I feel like a foot soldier Knowing that my face hides Love Fear Joy Emotion Tenderness And peace But behind my face there is something lurking in the shadows And its me My righteous self My unpretentious self My black self My woman self Now as I sit here alone I begin to ponder once again I say to myself, Now Aig’t I a Woman? I give myself a high five in the mirror And realize that I couldn’t have gotten from here to there Without a struggle A struggle of the mind Struggle of all the woman in my family Remembering, survival is not for everyone Especially during peacetime! Ponder that. 9/25/96 12:36am
- Embracing My Soul
By Veronica Novy If I could look within to see myself As I gravitate everyday Toward becoming the woman that I so desperately wish to be I realize that I have brought myself from there to here in one milliliter of a second That actually felt like an eternity But in fact was the blink of an eye Everyday I search for remnants and fragments to stitch together that one day will Embrace my soul and return me to an earthly woman Who Am I? I know tidbits of who I was yesterday, and can only surrender parts of yesterday to myself for myself For my new self tomorrow Embracing One’s Soul means finding peace within and not conforming to fit someone else notion of Who I should be Embracing myself means caring for me and what I represent and Realizing that every teardrop shed was and is for a reason It is to fill the hearts of my Mothers Mother Mother’s Mother daughter. Embracing my Soul means finding courage and strength in the face of obstacles and danger And not relinquishing any part of me that might leave me a microcosm of Who I am As I surrender at the end of each day I leave it fuller that when I started Wiser for again reckoning with the voice(s) within And more righteous for having the guts to Embrace My Soul. 3/8/98 1:16am
- Shine
By MJ Lorenzo Routine… No big deal I know the drill Long pause, more pause… Double take, retake. Multiple expressions questionable. They ask for more… Marching orders From here to there Waiting rooms start to feel the same All just poker faces following protocol. The phone rings My heart stops Irregular beats Tunneled sounds A blurred vision Envelops me. The voice on the other end Penetrates the news A maddening repeat Running with tears Uncontrollably… Closed in Worse fear Can’t breathe… …Can’t breathe Stop…just stop I plead through ‘what if’s’… Can I just wake up? Can I go back? Did I get lost somewhere along the way? I stumble And fall hard Feeling so betrayed Anger rises, Confusion is on the other end I went in as one, And now have a team. Consults and decisions Medical terms and options Am I clear on everything? Buffet style choices The load is too heavy I don’t belong here My flesh screams ‘Why me’? Everyone and thing Continues on, continues on As I am left here…frozen. A whirlwind year Of hard transformations Out of the storm I am finally set free. There is a light to my path now I hear no other voices Yet another test waits at the corner. No time to mourn what was lost -A bigger test As the world stumbles can’t breathe-again Can’t. Breathe. A year of loss Followed by more loss… The fear I thought had me I rebuke with promises. Armed with truth My journey is filled with only hope... A great reset I am stronger With every step. You carried me… Through every storm, …You carry me. At my worse Your strength revealed Out of my darkness Your light shines.
- Stay Resolute
By William Laferriere Well now Who’s to say What the cause is, and What contribution did I make And will this get resolved Does it get resolved How What questions need I ask How many chemo drugs will be proffered Which ones will I need Which will produce the desired result Which yield the nastiest side effects What are the percentages Can they work to my advantage Surgery Oh boy More of the same Talk to me about options Please mention all After all It’s my body in the mirror It’s my decision But I need help
- Texting You
By Desiree LeRoy Message alert the scan showed four spots on my lungs i have a biopsy tomorrow he said short of a miracle it is cancer i just want to start the meds and be clear i have a lot of fight in me i replied, you do Message alert it’s weird it blows air into the hospital gown to keep me warm i turned it off cause I was getting sweaty, lol i deflated myself you sent a picture, your head adorned in a hospital beret, your face scared but a familiar silly Message alert i’m nervous but ready to know once they have all the facts they can attack i love you Message alert i haven’t gotten the results back yet but I promise to let you know ASAP any pointers when you choreograph a dance? i kind of scratched out a routine on the plane i need to cut the song i also need to work on my toe fall you sent a picture of the mountains Message alert i got the biopsy results back cancer i have to keep fighting also, can I teach my work friends the hip hop routine you taught me? i gotta try and break it down work it, girl Message alert i have a scan in a few weeks to find out if the treatment is working until then just keepin going Message alert hey can you update the gofundme? it needs to say stage 4 metastatic breast cancer it has now spread to my lungs and brain -- we met after your brain surgery we sipped on chamomile tea melting into your living room laughing all afternoon you asked about donating a box of shampoo to a local shelter our last dinner you shared travel plans filling every month of the year you could barely eat but you still said mmm after every bite tikka masala riches i was scared but your flight schedule held us both our texts, sacred i will never delete your contact our exchanges of life, love, fear, and onward your dance of messages, forever mine herceptin autocorrected to perspective and ibrance autocorrected to vibrance so I’m taking those with me strength remains strength and i refuse to type the word forget Follow Desiree on Instagram: @somaticpoetry
- Breast Cancer and Positive Thinking: Positively Difficult
#FeatureFriday You might have heard from others that during your breast cancer journey, it’s best to "stay positive." After all, having an optimistic mindset has been shown to lower the risk of heart attacks, reduce stress, and generally improve life satisfaction. However, when a serious health threat like a cancer diagnosis is thrown into the mix, it’s not always that simple. Here, we’ve collected a series of articles, ranging from personal accounts to scientific literature reviews, all aimed at examining whether or not positive thinking can actually help throughout your cancer journey. The consensus? Probably not- at least, not as the miracle cure we’ve all been waiting for. However, that’s not to say that positive thinking should be completely abandoned. Check out the resources below to learn more. Positive Psychology in Cancer Care: Bad Science, Exaggerated Claims, and Unproven Medicine This literature review summarizes four main applications of positive thinking in cancer care, including having a positive mindset during care, using positive psychology methods during cancer treatment, and the concepts of “benefit finding” and “post-traumatic growth”. The last two concepts relate to a phenomenon of survivors finding positive aspects within the overall negative experiences they went through, and while there may be a mental health benefit, the reviewers found no physical or immune improvement, as many of the positive psychology studies claimed for there to be. While the reviewers agree that positive thinking can have benefits for some, with serious, often systemic illnesses such as cancer, it is difficult to expect one’s mindset to heavily influence their physiological state. Read more Impact of Attitudes and Feelings on Cancer The American Cancer Society created an FAQ-style resource for those wondering how their mindsets may impact their cancer care. They report that generally, people’s feelings and attitudes have very little to do with their actual diagnosis. You cannot think your way into getting cancer, and you also cannot think your way out of it, Oftentimes, by trying to be positive, it hides the negative emotions that someone may have with regards to their cancer, and that can prove to be more of a burden than simply allowing themselves to feel upset would be. Some things that they find may help with symptom management or stress relief include guided imagery, meditation, and meeting with a support group. Read More Smile! You’ve Got Cancer Barbara Ehrenrhich describes her breast cancer journey in relation to her trials with positive thinking. Finding herself lost in a sea of support groups, informative books, and medical advice, she turned to the positive thinking community in the hopes that it would make her experience a little more stress-free. Surrounded by messages such as, “‘Cancer was the best thing that ever happened to me’", or, “‘breast cancer has given me a new life. Breast cancer was something I needed to experience to open my eyes to the joy of living.’”, she quickly realizes that there is a less-than-positive edge to the current of positivity she was being swept up in. Read more Can a Positive Attitude Really Affect Breast Cancer Survival? The short answer is no, probably not. Not only does thinking positively not impact breast cancer outcomes to any significant degree, as shown by multiple studies, but by trying to be consistently positive when facing such a stressful situation, or hiding your true feelings when with others to seem more positive, it can often only serve to isolate you further from your support networks. By tying your mindset to your prognosis, it can lead you to feel like you are responsible for however your cancer is progressing, which simply isn’t true. But there are things that you can do to help your mental wellbeing- things like joining a support group, or getting help from a mental health professional can both help curb the stress and anxiety that accompanies breast cancer, and help decrease rates of depression and mental fatigue. Read more We hope that these resources help to clarify the often confusing relationships between mindset and physical health, especially as it relates to breast cancer. Breast cancer can come with a lot of complicated emotions, and we at SBC want you to know that it’s ok to not be ok. If you’re looking for some mindfulness exercises or a support group to join, then look no further: SurvivingBreastCancer.org has a few programs that may be able to help relieve some of the stresses associated with your breast cancer journey. Positive or not, we welcome you as you are.
- Today then Tomorrow
By Dawn Oswald Today Today I woke up What a blessing I ate, I took my medicine, I watched TV, I ate lunch, I watched TV, I took a nap, I ate dinner, I took my medicine, I watched some more TV and then I went to bed Today I repeated that all over again Today is another day, but it is the same It’s my ground hog day Tomorrow brings a new day I am going to change today Today I will eat, take my medicine, watch TV or enjoy my new hobby, eat lunch, watch some more TV or take my dog for a walk, eat dinner, take my medicine of course, finishing a new beanie or play a game with my daughter I am changing my life I will take my life back Today I woke up What another blessing I ate, I took my medicine to stay alive, I went shopping to pamper myself, I went for a walk to be healthy again, I went to lunch with my husband (a date), I took my dog for a walk, I volunteered my time, and I ate dinner then took my medicine I chose to change my life and to do what I want and when I want Today was a good day Tomorrow will be a better day Tomorrow only comes once You can look back on it, but it won’t change Make your today count Today, then tomorrow Tomorrow will come, but how will you fill your day? What will you do with your tomorrow? Today is a blessing Tomorrow can be a better blessing
- Katelyn's Story
My life was so unconventional, and I didn’t even realize it. While brushing my teeth in the morning, I would watch as my dad drained fluid from my mom’s lungs. After dinner as I lay next to my mom, I would occasionally have to move her breathing tube back under her nose. I would help situate my mom’s wig on her bald head before she left for work. I was only 10 years old. Not a year later, on October 21, 2014, my life became even more unconventional, and I still didn’t realize it. As I started to walk over from the fourth grade wing to the Middle School standing next to my chaplain, the only thing going through my head was that I was cool because I knew that none of my friends had ever stepped foot in Middle School. Little did I realize, I soon would never want to step foot in the Middle School again. My excitement was heightened as I stood outside the Middle School conference room waiting for my sister...we were going to go see mom! But. But. This feeling of excitement didn’t last long. Everything shifted in a second. My sister walked through the door, and she started to cry. I was more confused than ever. Little to my knowledge, my dad had been sitting in the conference room the whole time. The next words my dad would say, would change our lives forever. He said, “Your mom is gone.” I didn’t understand. I thought he was joking. I thought - silly him, people don’t die, but soon it became a reality. As I tried to speak to her as she lay still on the hospital bed, not responding to anything I said, I realized...this was no longer a joke, my mom was gone. This was almost seven years ago. I am now seventeen years old, and the pain of losing my mom at such a young age and never having lived a day where my mom didn’t have breast cancer is hard. There were so many things that felt normal when I was young but were not. The fact that her hair fell out. The fact that she could only drive with one hand because she had a wound under one arm. The fact that she had a port on her chest. The fact that I would have to sit in a waiting room in the hospital waiting for her treatments to be over. At the time though, I knew nothing else. This was my family’s life, our normal. But, I remember my mom's life not about cancer; it is about life, family, and community. My three favorite moments that I look back on with my mom are: watching movies with her on the couch, bedtime, and our final trip together. First, I loved doing the simple things with my mom; in particular, watching Flea Market Flip next to her on the couch. One night, she let us watch it during dinner on the couch, which I didn’t see as a special thing. I was blind to the fact that the reason we were doing this was because she was unable to sit and eat dinner at the dining table. Second, she was always the best at bedtime routines. Every night she would lay with me for exactly three minutes, this was my favorite time with her because I got her all to myself. After three minutes she would tell me “God loves you, mommy and daddy love you, and Katelyn in special.” Lastly, a month before my mom’s passing we went to Chicago. This was a special place. This is where my parents met. My favorite thing to do was to push my mom around the city in her wheelchair. My sister and I would actually fight over this job. And, when we returned to the hotel I loved to push myself in the wheelchair around the hotel room. This is obviously not normal. I didn't realize until later that the reason we were pushing her in a wheelchair was because she was on an oxygen tank, and walking made her out of breath at a faster rate. I don’t think I will ever learn how to cope with losing my mom at eleven years old. It was and is and will always be the hardest thing to go through. I miss her more and more every day.
- An interview with Laura Carfang, Executive Director of SurvivingBreastCancer.Org
Originally published by Dependable Cleaners here . In honor of October being Breast Cancer Awareness Month Dependable Cleaners wanted to put the spotlight on an entrepreneur making strides to support those who are and have faced a breast cancer diagnosis. So here we are! The spotlight is turned inward so here we go! Laura Carfang started SurvivingBreastCancer.org as a platform to provide support, education, and a community for those that have been diagnosed and their caregivers. Laura took her personal journey with breast cancer and turned it into a way to inspire, encourage and support others. As Executive Director she has set out a vision and is a strong believer that everyone’s voice should be heard. We spoke with Laura to learn more about her journey and her vision for SurvivingBreastCancer.org How can we offer support and compassion to both individuals fighting a breast cancer diagnosis and survivors of breast cancer? There are various and sundry ways family, friends, and caregivers can offer support to those diagnosed with breast cancer. I think the most important thing to keep in mind is that everyone is different, so take the time to ask the person what would be helpful to them. You may think it is helpful to bring over food, but a person diagnosed with breast cancer may have a particular aversion to certain foods due to the side effects of the chemotherapy; some people lose their taste buds, others may develop mouth sores – making meals a challenge and a reminder that they are ill. One thing I noticed is that everyone has an opinion when it comes to your health care. Unless the person with breast cancer is asking you to recommend a doctor, or specific advice, sometimes these options are better kept to yourself. Finally, going back to the first point, I think it is also important to ask the person what their boundaries are, how open they want to be about their diagnosis, I.e., which family members get all of the details and which people get the high-level updates. In my experience, my boyfriend and caregiver came to all of my appointments and he was the one family members were able to call and ask questions allowing me to catch up on much needed rest. What are some key initiatives SurvivingBreastCancer.org is working on this coming year? We have some exciting plans coming up this year. We are transiting to more of a virtual platform to enable our organization to help as many people as possible. Secondly, we are seeking grants, corporate sponsorships and cause related marketing alliances that will enable us to work full-time for the non-profit. Was there a specific moment in your breast cancer journey that set the stage for what you wanted the mission of your organization to be? Absolutely! Living in Boston, one of the world’s great health care Meccas, and being a major metropolitan city, I thought it was going to be easy to find other women, similarly diagnosed with breast cancer and make connections. I honestly thought that if I typed into google “breast cancer survivors in Boston” I would find a thriving community ready to connect and share their experiences. In hindsight, I guess I was looking for a breast cancer mentor so to speak. Boston offers several support groups and forums which are great resources, but they are usually spearheaded by the hospitals. However, if you are working, it is hard to attend weekday afternoon sessions. It was through my own experience navigating breast cancer that I launched my 501(c)(3) non-profit, Survivingbreastcancer.org . I wanted to create a virtual platform that provides community, education and resources for those diagnosed with breast cancer and their caregivers. A breast cancer diagnosis does not end when treatment ends, there is a lot of aftermath that comes with it. If you are diagnosed with early stage breast cancer, you are never truly 100% “Cancer Free.” Oncologists use the term “No Evidence of Disease” or “NED”. There is always a lingering fear that the breast cancer may return. That is where our organization comes into play. We are there when your medical care team says they will see you in 12 weeks, or 6 months or next year, and PTSD slowly creeps into the fabric of your life. This is when the community and support systems are needed the most. Tell us about a mentor who has been influential to you as a leader. I have to say that my mom and dad have been my biggest mentors and influential leaders. They are my rock! I am very fortunate to be very close with my family. My father started his own business in the financial industry 35 years ago, so in a sense I’ve grown up around entrepreneurship. From a young age I was exposed to the dedication and hard work that goes into running a business and that the hours are hardly 9-5. My mother works in the healthcare sector. I remember early on, she would find opportunities to educate her patients and their families. She incorporates nutrition and lifestyle medicine in her approach making it easy for her clients to understand the complexities associated with illness, food allergies, and autism, for example. She now leads the Carol Carfang Nursing and Healthcare Ethics conference where leaders, educators, and philosophers come together to discuss the most pressing issues in the field. I guess you can say, it’s in my genes and I couldn’t be more grateful for the mentorship and leadership I receive from my parents. Do you have any tips for entrepreneurs to help them maintain a healthy work/life habit? Most entrepreneurs will tell you that you have to have an unwavering passion for and belief in the work you are doing. There are times when entrepreneurship can be quite lonely. There are moments of doubt and insecurity along the way. However, it is in those moments that I remind myself, “if it were easy to put your life and souls’ work out there to be a success, then everyone would do it.” It takes a specific mindset and drive to be willing to take chances, to be judged (because everyone has an opinion), and to risk failure and still persevere, that distinguishes an entrepreneur. The work/life balance is a challenge and it comes down to prioritization. A simple black and white question I ask myself is, will this give me joy, will this help me get from point A to point B. And if the answer is “yes”, then it is worth doing. If the answer is “no”, then I move along to the next thing. The other technique that I use is dedicating one day a week for “me-time”. I have chosen Monday as that day where I do not book meetings, schedule podcasts, or work on blog posts. For me this is a guaranteed day where I can find a yoga class, go for a run, grab a dinner with girlfriends, or simply sit on the couch in pj’s and scroll through social media posts. Whatever you need to do to unwind, relax and refresh, it’s important to carve out that time each week. In the work that I do running a non-profit, I am reminded that it is not a race but a marathon. Like all non-profits, we are called to solve some of the world’s most challenging problems. We are not going to cure breast cancer tomorrow. However, if we can help one person, move the needle one point, and provide support, education and community to those diagnosed with this disease, then I know we are going in the right direction. Thank you Dependable Cleaners for publishing our story and supporting breast cancer awareness, programing, and resources. Want to learn more about Laura's story, here are some additional features: Channel 7 News & On the Podcast
- From Cancer Diagnosis to Empowerment with Dr. Paul Anderson
There’s no other word to describe the feeling when you or someone you love is diagnosed with cancer. On any given day, you might rotate between feelings of disbelief, anger, and grief. You may even feel like you’ve lost control over your own life. While your diagnosis might raise any number of negative feelings, here's the good news: you don’t have to feel lost or confused. In Cancer: The Journey from Diagnosis to Empowerment , Dr. Paul Anderson clearly outlines what you can expect throughout your cancer journey. More importantly, he demonstrates how to cultivate a mental outlook that will help you reach your best outcome. When it comes to healing, mind does matter. Drawing on decades of experience, Dr. Anderson offers practical advice to demystify the healing process, empower patients, and teach loved ones how to provide effective support. ♡ RESOURCES MENTIONED ⟡ Cancer: The Journey From Diagnosis to Empowerment: https://amzn.to/2NrybmM ♡ QUOTES WE LOVE ⟡ “Be as healed as you can be” Transcription: Laura Carfang 00:03 Hello and welcome to breast cancer conversations podcast brought to you by surviving breast cancer dashboard. I am Laura Carfang, breast cancer survivor and founder of surviving breast cancer dashboard, a nonprofit organization providing community education and resources to empower those diagnosed with breast cancer and their caregivers from day one and beyond. Hello, everybody, and welcome back to breast cancer conversations. It is so nice to be speaking with all of you today. If this is your first time tuning in, welcome. It's so nice to have you here. Please be sure to subscribe. We release our podcast once a week, usually on Mondays so you can always have something to look forward to as we begin our week together. Before we jump into today's conversation, I just want to give a quick shout out to all of the great amazing resources we have on our website surviving breast cancer.org. I got some feedback actually, that some of our listeners don't know about all of the amazing events that we have every week, every month, etc. So I want to make sure that you guys are aware. Every Thursday night, we host our Thursday Night Thrivers virtual meetup. It is our aka support group. But it's really anything but a support group. It's kind of like chill time to hang out at 7pm. Eastern, everyone is always welcome. I also kind of coin it our no agenda meetup because we talk about anything that comes to mind. Sure, breast cancer, but also anything else that we're going through in life, it's just a really nice time to hang out, chill and catch up. So if you want more information on that, you can visit us at our website surviving breast cancer.org forward slash events. You will also find on that website more information on all of the amazing webinars we have coming up our Sunday NBC series where we host webinars every other Sunday, plus our monthly book club where we read books that have nothing to do with cancer as well. So as we build this community, there are just so many ways to get involved. And speaking of books, I am excited to announce today's podcast topic where we are going to be speaking with Dr. Paul Anderson, who is the author of cancer, the journey from diagnosis to empowerment. As we know, there's no other words to describe the feeling when you or someone you love is diagnosed with cancer. On any given day, you might rotate between feelings of disbelief, anger or grief. You may even feel like you've lost control over your own life. We've all been there. While your diagnosis might raise a number of negative feelings, there's good news, you don't have to feel lost or confused. In Dr. Paul Anderson's book, he clearly outlines what you can expect throughout your cancer journey. More importantly, he demonstrates how to cultivate a mental outlook that will help you reach your best outcome. When it comes to healing. Mine does matter. Drawing on decades of experience, Dr. Anderson offers practical advice to demystify the healing process, empower patients, and teach loved ones how to provide effective support. Welcome to the conversation. Dr. Paul Anderson 02:57 I've been around medicine a long time. So I started in the laboratory end of things in 1976, actually, so it's been doing this a while, went back finished medical schools A long time ago. And what happened really just the very short version of the story is when I started practice, I really wanted to be a general practitioner, which is what I was. But I was also very interested in a lot of integrative medicine topics and palliative care things. So what started to happen almost right away when I opened was people realize that I was doing certain types of therapies that other doctors in the neighborhood weren't. And so we started getting a lot of cancer patients. So it really it didn't start out that I thought cancer would be the focus etc. But that's really very rapidly what happened very sick people with not with the chronic illness and cancer. And that really grew into you know, if you go back, say 25 years or more there, the idea of palliative oncology was almost non existent. The idea of integrative oncology was almost non existent. I mean, it was really, we, we were all learning a lot. But people needed help. So that's really where it started. And from there, there was a good part of 20 years where I did that a lot. I also have always taught I teach physicians as a large part of what I do now. And mentor doctors and so I was really involved in trying to, you know, move that part of medicine forward. And in and amongst all of that in about 2000. Let's just for sake of argument, say eight or nine you mentioned that I ah I had a university post where I was full time professor in a medical school and we I had a NIH funded study we were doing. And it was a collaborative between my university in the Seattle Cancer Care Alliance, which is University of Washington and Children's Hospital and Fred Hutchinson, and you know, some very big players. And what it started was I didn't start with study, but I joined it right away. And it was if we took people who had largely breast cancer, but there were a lot of other cancers as well, from this large, collaborative, those who wanted to do integrative therapies and palliative therapies, this stuff I've been doing, what if we track them, and then match them to people same age who did standard therapies, and so everyone did standard therapies, but we had good add ons. After five years, would we see better quality of life or survival, etc. And so we did that for five years, what got me involved was the study had an interventional part, that they couldn't start until they had somebody who had done that before. And that's what I was doing, the intravenous therapies and all of these other interventional things. So I was part of that for the five years, and I almost thought we got funded because they didn't think it would make a difference. And at the end, we actually got some very positive note that our patients did actually live longer, you know, compared to age matched, and it spawned another study that looks a lot at quality of life and some other things that are going on. So I've had a not planning at all, but I've had a very rich background with cancer patients. And so what really happened as far as writing about cancer, I've always written because I'm a teacher. But right after the study, I started to publicize some of the things that we had done, because if you've ever looked at studies, there may be parts of the studies that no one ever publishes, because there's so many things you discover, you didn't realize. So I went and started teaching. Well, I was doing that. And a doctor I hadn't seen in 25 years, who went to medical school together, came up to me at a conference and said, You should really tell this story. And you, he says, you have a hard time getting a publishing deal, though, because you're, you know, no one knows you except in the academic world. And he says, but I can get you a publishing deal. So we wrote a book together that was predates this book, which was really a lot about those other things, sort of the, you know, what I would call the what happens to you with cancer and what what are choices to make that are better and worse in the, you know, integrative space, etc. When we were done with that books, in many languages around the world, it's been very popular call outside the box cancer therapies. But we were done. I was mentoring my clinic and my doctors, and one of the things that I I felt like we did a great job with the, what do you do with cancer as far as your body goes, but what we kept I kept running into was, we talked a little about the mind body connection, and just the logistics of, oh, what do I do with this diagnosis, I didn't want it I you know, what I do with my family, what I do with, you know, everything. So the more I worked on that with my own doctors and mentored people, the more I thought, you know, agnostic of how you're treating cancer, what you're doing about your cancer, the internal part that you go through, and your closest loved ones go through and you get diagnosed, is so critically important. So that led to this book, cancer, the journey from diagnosis to empowerment, literally the point, it's, um, I designed it to be easy to read, not super heavy and academic was the first time I ever wrote something like that. But honestly, it was it. This, I mean, there is some research and some data and things that I, you know, looked at or whatever. But really, this came from just my day to day experience over those three decades. And looking people in the eye, getting diagnosis and walking them through that. So the point really, is, there is a way to go from the shock and whatever emotions go on that you feel to a place where you are more, you know, empowered, self-actualized, whatever you want to call that. But it doesn't happen automatically for most people. So that's, that's the short version of all those years. Laura Carfang 09:30 No, that's wonderful, such a rich introduction as well. And a, you know, decades of experience, which I'm so excited to have our listeners kind of take us on this journey, right from diagnosis to empowerment. I feel like anecdotally we speak about that a lot in our like support groups and our blogs and the work that we do, because we know that we anecdotally it makes us feel better, right when we exercise we feel better when we take time to focus on the breath and the mind body connection that you're talking to About, we know it helps, but we don't always know why it helps. And I would like to take a step back quickly to just so we can define terms for people who might who might not be aware when we talk about kind of like the traditional therapies, I think you're referring to like the surgery, the radiation and the chemotherapy. Whereas integrative care, which I think is a nice segue from what used to be referred to as alternative medicine, where it's no longer alternative, it's how can we put these therapies together? And really integrate them so that the quality of life and you know, is there for the person going through the treatment? Do I have that correct? Dr. Paul Anderson 10:34 Very much. Yes. Yeah. Excellent. It doesn't always work out that way. But that's the goal. Yeah. Exactly. Exactly. Laura Carfang 10:43 And I know when I was going through my own personal treatment to a lot of these integrative therapies were recommended to me, such as acupuncture to help with some of the side effects that I was going through. And, you know, it's, I think, just a mindset also. So what I love about your book, is that right from the beginning, you kind of paint this picture of the shock and the devastation that comes with a cancer diagnosis, and then how mentally we can start making this shift. And you kind of talk about two different characters in your book and kind of the diversion that these two characters take. Can you tell me a little bit about these personas? Dr. Paul Anderson 11:20 Yes. So there's, there's two characters that you get to meet Well, you get to meet some other people later, but Bob, and GM, and they're actually real people, obviously, it's not their names, and I change details, so no one knows who they are. But they're very real people. And that was a big part of the motivation to write the book, other than what I was seeing just with patients, and there was sort of a hole here in that space. But the the publishers in I came up with the idea of, could I tell two stories. And the publisher really encouraged that, because the rest of the book is useful from a technical point of view of Gee, I'm stuck and I'm angry, well, you know, where do I go or I, you know, I can't get my family on board or whatever it is. The stories really are there to give the two counterpoints two ways you deal with the, you know, that trip from being diagnosis, to either not empowered or being empowered. So each one of them embodies that. And it's real stories. It's a, you know, everything a book is very real, from real experience. So the point of that, though, is sometimes we you know, sometimes we learn from data and bulleted points, and there's that and sometimes just learned from stories, stories are wonderful. And my, the first thing I was like to say is I don't, I don't judge either point of view, I, of course, you never want a patient to become angry and stuck, and, you know, self-sabotage, but you know, one of them did. So it didn't make me happy that they did, but that's, that's the person's choice, everything's your choice. But if you want to do something other than that, you know, there is a trajectory. So those two stories really are, we see a lot of ourselves in them in different places, and the stories, you know, each, each chapter sort of as the technical parts of where to go, the story kind of unfolds in that, you know, in that order and direction. So yes, it's there to add some humanity to, you know, what otherwise could be a little technical book Laura Carfang 13:25 Absolutely. And I think sometimes we forget that our own diagnosis extends just beyond the self, that it impacts our families, our friends, and I use the term like we all the time, like we have cancer, we are going through cancer, we are going through treatment, because as I think you point out in the book is there's this grieving process, that we're all on a different journey in terms of those, like anger phase denial, phase acceptance, phase etcetera, but then our family and loved ones might be on a different path also. And so how do we deal with these different personalities or, you know, my experience, I love my mom to death, she's a nurse, and she, when I was going through breast cancer, she wanted to be the nurse. And I really had to turn to her and say, No, I need you to be my mom right now. And that was a challenging and hard conversation to have. But you know, I think you talk about that also in your book in terms of the role the family plays, and the grieving process too. Dr. Paul Anderson 14:22 Sometimes it's the patient with cancer, who is the one really struggling and may be stuck in, you know, denial or whatever stage of grief. And I did use those stages of grief, you know, to it's a framework we're all familiar with, usually and it is actually the order that people kind of process cancer diagnosis into but the other side of it though, is you can actually be doing pretty good as the patient but you have to understand and it's not your responsibility, but the people around you who love you and are close to you are just as shocked and just don't know what to do and they might be angry or they might have You know, what happens a lot like with your mother, as a nurse or any, you know, any medical person, their default is if I do something for you, medically as a nurse, or if I'm your doctor, I'm doing something to help you. And really, it's harder sometimes to take that roll off and just be the loved one, you know, the parent, the spouse, the partner, whatever. And that's really, we talked about that, in the book, those discussions of Look, this is, it's great, you want to do that, but this is what I need from you, you know, I need this primary relationship we have, and it's so important. And a lot of times, and I saw this, you know, weekly with with patient families, some, it's just like, it works out, and everyone sort of sorts out where they're at, and they get over, you know, the place they were stuck. But sometimes you really have these two divergent things, especially with like partners or spouses. And that's not a healthy, like, none of you the point of the book is, if we move more towards being empowered, in our small circle, including the patient, our outcomes are better, it's, you know, it's not great to have cancer, but it's, it's a more doable thing, and you actually get better outcomes when you do have that. So the fact your close circle is, is so huge. And, and they're going through it a different way. You know, what I usually remind people is when you hear that you have cancer, it activates your your fight or flight system, and it activates, you know, your partner's fight or flight system, but what that connects to is two different worlds, you know, they may have seen some, you know, very bad outcome with cancer had a primary, you know, loved one or relative go through something that they thought I'd never ever want to see that my life, well, then you hear, well, my wife has cancer, it's, it takes them there, then take him to some logical place. So there's a lot to, you know, it's not easy, but it's really worth it. And it's really worth it at least to get the people closest to you on board. Laura Carfang 17:09 I think you were hitting on some key points about you know, empowerment, how can the patient feel empowered to have those conversations with people to say, this is what serves me now, this is what's helpful to me and what's not helpful to me, I think a lot of times, you know, it's easy to just kind of harbor some of those emotions. And, and that really makes sense of it. And, and to feel that it's okay to disagree with someone, if it doesn't help you. What I love about your book is that you immediately say like, it's okay to be selfish Now is the time to put yourself first and yourself and your health are the only things that matter. Everything else is secondary. And I think just reading that was like, like, yes, like, I'm ready to go take on the world, like, I matter, I'm important. And I can say, like, yes to what I need, and whether that's a nap or whether that's a walk, you know, I sometimes feel like having those words and reading them, give us give us the permission to say that it's okay, it's your allowing us that permission just to be okay, on those good days. And to not be okay, on those bad days, Dr. Paul Anderson 18:10 As you well know, it's, most people are not socialized to a place where it's okay to, you know, be the center of what needs to happen. And, and that becomes a real, you know, stumbling block for a lot of people, which is why, you know, almost every, if not every chapter where there's sort of, you know, you can get stuck here and move on. The first thing I say is, it's okay to be that way. It's okay to be sad, it's okay to be angry, it's okay, whatever. The point is, that's a place in time and you want to move from there. But the other thing is, it's, it's more than okay for you to take care of yourself and say, whatever it is, you know, I, I can't do this activity anymore, I need to focus on this or I need time, so I can take care of my body or whatever it is. And most people just don't have that internal, the message they hear back is well, you should think about other people or you know, something like that. And, and, you know, we shouldn't think about other people but you, you are engaged with, you know, a process that's not got your best interests at heart. So you have to have your best interests at heart. Yeah. Laura Carfang 19:24 And you definitely make that connection between like the emotional piece, those thoughts we tell ourselves in our head, and the impact that it has on our outcome and diagnosis. A lot of the conversations that I have in some of my circles most recently, I am four years out from my original diagnosis, and I am still healing I am still now trying to let go of the pre cancer me work on the current version of me. And also trying to be gentle and practice that self care piece because there's still a lot of things that I can't do. And just last night in one of our support groups that we have Every Thursday night, we were talking about, like, we can't go, we can't ever go back, just like the grieving process, right? Like, we can't be in that hole of, Oh, I wish I could have done should have done, you know, used to be able to do. But look at all the amazing things now that I can do, because I've come out on this other side, whether it's, you know, I no longer practice the vigorous yoga I used to do, it's more of like a slow meditative practice and, and coming to terms with that, I would love to hear your opinion on kind of like the self care and the self healing piece. And what you say to someone who still may be a little bit stuck in, in that like, sad world of like, How did this happen to me, but I want to come out of it, how can I take better care of myself, Dr. Paul Anderson 20:42 And that's where the rubber meets the road really, for most people. The first thing, you know, that I think is most important with that discussion is allowing the person time to get to that place where they actually say it. Because if if some outside person just tells you, you know, look, you you need to stop thinking about the past, and you needed to do some self care or whatever. Sometimes people need that maybe to move off the dime. But really, that has to come from within. And I think the most important thing is it's not. It's the extremely rare human who wakes up one morning and says, Okay, today, I'm all about self care. And I'm going to forget about the pre cancer me, most people, it's just, I've come to realization, I want to go there, I have no idea how to do it. So I'm willing, but I'm, you know, unaware. That's the moment at which then, you know, the whoever is helping, whether it's a medical person, or family or therapist or whatever, or support group. That's the point at which you provide resources that are the next steps. And I think the most important thing is not overwhelming people. Because you can come to realization, you know, for people who don't have cancer, it's, sometimes they'll come to realization, I need to take better care of myself and exercise. Well, if you suddenly give them you know, a 400 point exercise plan, and they've never exercised it, they're not, you know, that's overwhelming. Same if you have cancer, and you realize you got to do something, and you have to move away, you know, from past thinking, etc, you got to start with just baby steps and move forward. So a lot of it is that holding a place for the fact that you're doing it this realizing you can only do so much at a time. And, and really the you know, you probably saw kind of the order the book is written in, what I say is that you might be great with the stuff in chapter one, but chapter two, you might be stuck at great spend some time there, you know, it's baby steps. And every day, just, you know, just like grieving or just like processing anything, every day is a new day to do that, too. So you don't necessarily wake up on day two or day 20 and say, you know, I've got all that handled, and, you know, most the time you wake up and say I still have cancer and I need to, you know, I need to be in this other place with it. So a lot of it is just being gentle, gentle motivation forward tools when they're needed, but not too many. Because I, I did see that a lot that that sort of stimulated some memories for me about when I was thinking of writing the book, mentoring doctors, especially, you know, newer ones, and they would get a cancer patient give them way too much all at once. And the patient's just like, you know, overwhelmed with, you know, so they have all this physical stuff they're doing and maybe they're doing, you know, chemo, or maybe they're getting surgery and recovering and doing 11 other things. And then they've got, you know, a 40 point list about changing their diet and their mental set and their other site. Without cancer, you can't do all that, you know, with it. So, you know, so let's, you know, let's start with one thing and move you forward and keep going. That's, I think that's the most humane way, but it's also the most sustainable way to do that. Laura Carfang 24:16 Yeah, I hear a lot of times that, you know, cancer can be that catalyst that wakes us up. And that ignites some sort of flame within us to make behavioral changes. And another piece that I love about your book too, as you give us all of these tools and allow us to linger in various chapters as we're doing the inner work to heal internally. I think that's incredibly important what you mentioned and resonates with me very much so to say that we have to want that change, we have to want to have that mentality and shift because if it doesn't come from within it's going to sound like one more thing on our to do list and potentially, you know, depending on your your behaviors and character like it might retract, right? You say well, I don't want this at all and I'm even going to hibernate even more so It's definitely a fine line and something that people need to tread lightly on for sure. And, you know, I think one of the tools that you you share in the book is the opportunity for us to control what is in our control, and then let go of what is not in our control, I think so much of a cancer diagnosis, when you feel like everything is ripped out of you, how can we make sense of what we can do on like, kind of the small chunks, and bite sized chunks of like, day to day, this is something that's in my control. And it could be that mindset, or it could be the diet, it could be taking a walk, or an exercise, like something that is tangible, because so much of it is unknown, especially in the cancer world, right, we have, treatments are constantly changing or evolving based on how you're responding to a particular drug. And, you know, I hear a lot of times too, you know, we think we're going in for one surgery, and then lo and behold, there's an infection or something happens, or you need for breast cancer, your exchange surgeries, like, there's so much, and there's a lot of unknown. And, you know, to kind of tie this back to those various phases of grief and loss and sadness, and then unknown, but we just want control, we want to know what we can do. And I used to tell my doctors to like you're in charge of the medical side, I'm in charge of like, the health and wellness side, and we can meet halfway, and I feel that way that I am empowered, and that I can take an active role in my health. I think you speak a lot about that in your book as well. Dr. Paul Anderson 26:30 Yeah. And it is so critically important, with, with cancer as a journey, but especially like with what you're describing where treatments can change, suddenly, surgeries Can you know everything can change suddenly, because your body is going to react the way your body reacts. And we see that all the time, you get 10 people with the same chemo regimen, and, you know, seven to one way and you know, three to three different ways. And so, you know, part of what I try to get to in the book is, those are things that you don't want to totally, like, just go on autopilot and say, Well, whatever, you know, but I mean, you only have so much control over how your surgery goes, that's, you know, you can prepare for it and all that stuff, but the rest is about the surgeon, your body and how it all works together. Same with chemo, you know, or a targeted therapy or something, your body and your immune system do the work and you may not have total control. And one of the things I've seen that gets people to stay stuck is if their focus is all on, you know, especially people that like a lot of control, that's probably that's a human condition. But, you know, some people are much more into control and other people. I've seen them get so tied up in those things that they can't really control, that there's no energy for this stuff, you can, you know, which are the harder things literally waking up and saying, you know, it's another day with cancer, but it's, you know, it's my day, it's, you know, this is, you know, this is going to whatever happens, however I feel, it's still my day, and this is going to be how it goes. And I think that that switch of doing inventory, because you know, every month is different, what's in your control, what's kind of in your control, like you could maybe choose your doctor, maybe choose whatever. But beyond that the medical side, like you say is it's going to do what it's going to do. So then you got a whole bunch of other stuff you're in control of and that and that, that is empowering and of itself, because people get to stay stuck in the area of stuff they can't control, you're automatically disqualified you like you, you're disempowered, because I can't be empowered about something I have no control over, you know, I can be empowered about how I am around that. But, you know, so focus on the stuff that you you're totally in control of. Yeah, Laura Carfang 28:57 You know, with a cancer diagnosis I was, you want a plan, you want that roadmap, and I had to quickly learn, I think it was my second appointment after chemotherapy. And I was like, that plan has to go out the window. Like I just can't hold on to that. And it's I think it's also hard to going back to the chapters on like family and friends. They turn to you to say like, well, what's next what's happening next, they want a road map also. And so all of a sudden, it can be compounded with you know, I was given some information, the information changed. And now as I'm talking to new, the newly diagnosed it's it's very similar type of peer to peer advice of, you know, you have to be flexible and nimble and just kind of go with the flow sometimes because it'll save you some stress and heartache. Dr. Paul Anderson 29:46 You really have to hold it with an open hand because there's just, you know, there's so many things that can change and not even go wrong. Just change you know, and People obviously we don't, you know, if we don't have cancer, we're not usually sitting around focusing on how cancer is treated and things. But, you know, I was trying to tell people look, you know, your radiation oncologist or your medical oncologist or surgical oncologist, they have huge jobs that have almost no margin for error. And so their whole world is tied up in doing dosing your radiation, or figuring out your chemo or changing your chemo or doing the right surgery for the moment. To keep you as safe and healthy as possible. So like, that's their world, they're really tied up in it. And you just don't know how many variables they have to sift through. So changes are part of the deal, usually. So, you know, pick good doctors, let them do their work, keep on top of what they're doing, ask questions, but then, you know, focus on being as prepared as possible to either do or not do treatment or be as prepared as possible to deal with what you can it's, it's a huge thing. If you think, Oh, you know, cuz I'll use this analogy. Most of us have been to the doctor because we got, you know, strep throat or we had a broken leg. Those are pretty linear treatments, you know, there's X amount of time, there's this medicine, and you're better sometime, that in the future. Cancer doesn't work that way. You know, every day, there's sort of all these variables you have thrown up in the air, and then, you know, you see which balls hit the floor first. And that's what you do. Very different. So it, it's Yeah, that's really good peer to peer advice. Laura Carfang 31:38 100%. And I think that's a great way to reframe it as well, taking it like you're not changing it because I'm just going to be very candid. Like, I think sometimes too, it could be like the trust that we have with our doctors, right, it's like, you're given one thing. And now you're changing it on me. And I think the way you just reshaped that was like, okay, it's a positive, you're changing this because you're tailoring it. But it's my own symptoms and my reactions that I'm having, which is completely different than somebody else. And so I love that, that's great positivity, I want to pick your brain a little bit more on the mindfulness and kind of taking a deeper dive into the integrative therapies and complimentary care that you were discussing in your book. And I know you also mentioned a little bit about palliative care. And I think sometimes we think about palliative care as like, end of life and sometimes use it interchangeably with hospice, but it's not necessarily and to utilize the palliative care and integrative cares as quality of life. How, how can we speak about quality of life? And how do you define that? Dr. Paul Anderson 32:40 I think that's a really good. And sometimes I, I forget, because I think of palliative care is really encompassing, but a lot of people do they hear palliative, and they think, Oh, no, you know, it's the same as hospice or something. Now, it can include that. But really, as I was mentioning earlier, you know, 2030 years ago, the idea of palliative oncology was just end of life care. It has come a very long way since then. So now what that really means and maybe a better term, although it's not the term people normally uses is, you know, quality of life and health enhancement is really what you're talking about in modern times. Now, he going back to just what I said earlier about, you know, you've got your surgical oncologists and medical and radiation oncologists there, their world is wrapped up in their treatments, which are so complex, they understand the need for this other stuff, but that's not their job. That's not what they do. You know, it's people like me who do the quality of life and other care. What I usually tell people is there, there's really four steps in a cancer journey. The first step is you don't know you have cancer, and its primary prevention. Most people are always making cancer cells, but they don't develop cancer don't do too later. The next step is what the book is talking about, which is diagnosis and initial treatment. And then the next step is actually recovery from treatments so that you know, you stay in remission or you get towards your mission, etc. And then the next step is secondary prevention, which is, let's not have it come back or get worse or you know, whatever. And the reason I divide it that way for people's minds is the amount of effort and energy you as a patient, have, time wise, energy wise, etc. to put into working on those things is very different at each step. primary prevention, preventing things it's that can be 100%. If you are just starting with some surgery and chemo or radiation or whatever, you aren't going to have time and energy for very much you're going to do you like to say baby steps just to shore up everything. But in the recovery part in what I would call palliative or quality of life recovery care. It's not about hospice or any of life normally, it's about let's get you recovered from, you know, all of all of this treatment you just had. It's, you know, there, there's no, uh, maybe there is I can't think of a cancer therapy of any kind. That is any fun and you come out the other side feeling healthier than you did when you started. It's, it's, you know, there's this job you're doing of treating cancer and now you know you want to recover? Well, one of the things and I get to the mental emotional part in this book, the prior book, we talked a lot about it medically, but the more you do on the other end of recovery from surgery, radiation, chemo, etc. Actually, the more calm your cancer stem cells are, and the less chance of recurrence later on. So when we're talking about palliative oncology, yeah, it's the whole spectrum. And while it might include more end of life things, that's, you know, 5% of what we're trying to do, mostly what we're trying to do is make you as healthy as possible, so that you have the lowest index of cancer wanting to come back or be aggressive, etc. So it's a, and there's, there's so you know, if I think of just what we didn't know, five or 10 years ago, but if we go back 25 years ago, was like, well, we can do something. I mean, it was, it was really, it just, you know, it's it's been logarithmically expanding. And, and the research has to, I mean, you know, the first book we had, like, over 1000, scientific, you know, resources. This book isn't so much about that, but but the mindset part, I guess, you know, big reason for the book, this, this book about the mindset is and empowerment, you can do all the, the perfect medical oncology, you can do all the perfect recovery and palliative and quality of life stuff. But if your brain is stuck in that place, where you're still angry, you, you know, don't want this cancer, you're mad at it, it's, you're a victim, your body doesn't feel the same. And so it's it's part and parcel with the external things you do, such as, you know, fixing your body after surgery, or, you know, recovering from chemo or whatever. It's also your brain being on board with that. So it, you know, moves you forward. Laura Carfang 37:25 I couldn't agree more, I think the mental side is the muscle we have to work also, right? It's not just the physical, you know, the exercise, but how could we mentally help ourselves grow after such a traumatic diagnosis. And I completely agree, I think when we talk about the secondary prevention piece, and I do kind of want to reframe this also, because I'm also very sensitive to a lot of women in our community who were diagnosed with metastatic breast cancer de novo. And so there is some anger there where you don't have that initial early stage, to have that option. You think you're being preventative, and there's a variety of reasons why that happens. But you know, when we an app, I don't want to put words in your mouth or look for your buck. But as I was reading about the secondary prevention piece, it wasn't just a second recurrence of breast cancer, but it was that no evidence of disease or no progression of disease, right? Like, how can we take this and again, still feel empowered, and even with a terminal diagnosis still move forward. And, again, be empowered with the choices and the control that we have? Every single day that we wake up? Dr. Paul Anderson 38:36 You did a good job putting words in but the idea was secondary prevention, of course, is you there, there are things you can do to get to a certain place there. But as you say, some people and this was a large portion of our patients started out de novo with, you know, metastatic disease, and they, you know, there isn't the first two or three steps, you know, it's just boom, here it is, and here's what we're gonna do about it. So secondary prevention, the nice thing about the more modern way of looking at it is, it's not just for people with no evidence of disease or into remission. It's also for people who are either really, we had other two other areas, one was progressive, but but slow progressive disease, and the other was stable disease. And so you may have metastatic, you know, stage four cancer, but you can do everything you can to keep it either very slow, progressive or stable. So it's not in remission, but it's remission. Like, there's a lot of things you can still do there to manage all of that because, you know, you're just as shocked but I would say yes, probably a little more anger comes up because you feel like gosh, why couldn't I have been diagnosed? Stage One, you know, like my friend did or stage two, in here I was diagnosed at stage four, which is a lot of people nowadays. You don't even, that's not part of your choices, which is terrible, it's too bad, but that's the way you know it is. So for that person, they have to rewind to the place where you process the anger and the loss of total control over everything. Plus, you're grieving the fact that you didn't get it stage one diagnosis to deal with or, or a stage two or something. And it's the same steps, it's just you, you're going to deal with different emotions, because you literally had a whole bunch of options you never got important part is, it's still so critical to to do the mental emotional and Mind Body connection, work, etc, to get beyond that, because we've literally had people with metastatic disease, who, you know, through whatever combination of therapies and, and supportive things stayed stable and had very good quality of life for years and years and years. And, yeah, they never, you know, stage four, cancer didn't go away, you don't really see that very much. But they had, you know, what they said, were wonderful life, you know, wonderful quality of life, dealt with it as it came in. And I think, you know, it's, it's, that's it, those are the elephants in the room, which are, nobody wants to talk about that real harsh reality that, you know, and again, you're not telling the person will get over it, you know, because that's, that's not, it's, you know, you don't have to get over it, you have to, you have to recognize you have every right to be angry, because this, there's nothing fair about this. But staying in the anger won't make you healthier, you know, processing it will moving forward. And we had, you know, in the, in the NIH research, the large majority of people that were doing interventional things, I was in charge of all but one where stage four people most stage for a diagnosis. And they were which makes you more amenable in research to do all sorts of things, which is what we did. But they were, they had all mostly come to the place where they were so they were an empowered group. And they didn't like having stage four cancer, and, you know, they didn't like the effects and all of that. But the reason they were part of this research project, and we're we're in my section where they knew that at some point, it would help somebody down the road. Laura Carfang 42:48 100% response I totally agree. Dr. Paul Anderson 42:50 Those are the people that motivate me, many of them are no longer with us, but a lot of them still are, you know, we we had one lady that was diagnosed at 85. Doctor said, she wouldn't live to see 86 and we celebrated her 90th birthday in our office, and she made it to 96 years, and she lived 10 years. And it was all her like, just the way she dealt with it. So, yeah, it's not, you know, none of the things are easy. You know, these aren't easy conversations to have with yourself, let alone with you know, people in your circle, but they're so necessary for your mind to be free to let you be as healed as you can be. Laura Carfang 43:38 I think the positive affirmations and you know, not letting someone else dictate time, that how much time you have left to live, no one can say that, right. So right and wake up in the morning saying, today's a new day, I'm going to live it to the fullest. And you know, it's it definitely has a positive outcome and relation on your own mental health and on your body and on your outcome. So it's really great to hear. Dr. Paul Anderson 44:05 Very much Yes. Laura Carfang 44:06 You'll be able to buy this book cancer, the journey from diagnosis to empowerment via Amazon. It's also available on Kindle, as well as an audiobook. I will link to all of this in our show notes below. So this has just been wonderful. Thank you so much. Dr. Paul Anderson 44:21 Thank you. It's a perfect organic conversation. Laura Carfang 44:24 Yeah, exactly. That's how I love them too. Thank you for tuning in and listen to our podcast. If you'd like to find out more about our organization and upcoming events and ways to connect. You can find out more by visiting our website at surviving breast cancer.org. And we'd like to acknowledge that all of the information on our podcast is from personal experiences and it is not a substitute for professional medical advice. You should always consult your medical care team. If you're looking for specific topics or would like to be a guest on our show, feel free to contact me directly at Laura at surviving breast cancer.org. And of course, we have a couple social media handles. You can follow us Sat as well. For example, surviving breast cancer org all one word, as well as our podcast, specifically breast cancer conversations. Until next time, keep on thriving.
- Is Soy Good For You with Karla Mans Giroux
TRANSCRIPTION: Laura Carfang 00:03 Hello and welcome to breast cancer conversations podcast brought to you by surviving breast cancer dashboard. I am Laura Carfang breast cancer survivor and founder of surviving breast cancer dashboard, a nonprofit organization providing community education and resources to empower those diagnosed with breast cancer and their caregivers from day one and beyond. Hello, everybody and welcome back to breast cancer conversations. It is so nice to be speaking with all of you today. If this is your first time tuning in, welcome. It's so nice to have you here. Please be sure to subscribe. We release our podcast once a week usually on Mondays so you can always have something to look forward to as we begin our week together. Before we jump into today's conversation, I just want to give a quick shout out to all of the great amazing resources we have on our website surviving breast cancer.org. All of our podcast listeners are invited to join us on Thursday nights for our Thursday night drivers meetup. We meet on zoom every Thursday at 7pm. Eastern you can RSVP from our website, and a zoom link will be emailed to you. We also send out weekly newsletters on Mondays and Fridays. We have an every other Sunday metastatic breast cancer series that we produce, as well as a once a month breast cancer book club that we host. The best part about the book club is that we don't read any books that have to do with cancer. It's pure escapism, a lot of fun. And we meet on the first Sunday of every month. You can check out what book we're reading again on our website. Today on the podcast, we are speaking with Karla who is not new to breast cancer conversations. She actually provided us with a beautiful 45 minute long episode where she shares with us everything she knows with regards to nutrition education around clean eating and living with metastatic breast cancer so I'll link to that full episode below. However, I wanted to pull out a short excerpt from that longer series because we want to focus on Phyto estrogens. If I breast cancer is ER positive, it can be very confusing to understand if we should be avoiding soy eating soy products, avoiding Phyto-estrogens etc. I am so excited to have Karla back on the episode to help us answer some of these questions. Welcome to the conversation. Karla Mans Giroux 02:17 Now let's talk about Phyto estrogens and breast cancer and Laura and I talked a little bit about this ahead of time and I do like to share this information and it is controversial. But there are studies that show of course you'll always find on any topic study that's forward a study that's against but Phyto estrogens are plant based compounds that mimic estrogen because their chemical structure is very similar to that of estrogen from the body. They have been found to be beneficial in combating symptoms and conditions caused by estrogen deficiency. Therefore, this may be a particular benefit to pre and post-menopausal women who are having their hot flashes. Phyto-estrogens may also play a role in fighting cancer. However, it is still controversial and more research is absolutely needed to understand this. Unfortunately, they do not spend a lot of time and money on researching something that can't be patented. But there we are. There are studies that have revealed that high consumption of soy products is associated with low incidences of whore hormone dependent cancers, including breast and prostate. Soybeans contain the large amounts of isoflavones. Previously, it's been demonstrated that genistein, one of the predominant soy isoflavones can inhibit several steps involved in carcinogenesis. So it can inhibit the development of cancer. It is suggested that genestein possesses mechanisms of action, including inhibition and modulation of different signaling pathways associated with the growth of cancer cells. Moreover, genestein is also a potent inhibitor of angiogenesis. Uncontrolled angiogenesis is considered a key step in cancer growth, invasion and metastasis. I see Dr. Keith Block of the Block Center for Integrative Cancer Treatment in the Chicago area. I've talked to Dr. Block many times about soy and breast cancer and fighter estrogens and breast cancer. Dr. Block has told me that processed soy foods such as soy burgers typically contain very low amounts of that genestein and other soy items such as miso and soy sauce contain even less. In fact, he says a whole bottle of soy sauce contains only about six or seven milligrams of isoflavones, which would have no effect at all on breast cells, though it would be quite a lot of salt. So Dr. Bullock counsels that there is no need to pass on the tofu or the tempeh, so long as you're eating soy foods in moderation, just like anything else, and be sure your soy is non GMO. Dr. Block also stated in a 2016 article that he wrote, he stated in 2016, the studies suggested that eating moderate amounts of soy foods is safe for breast cancer survivors. In fact, in studies conducted by Dr. Anna H. Wu, and others at the University of Southern California, show that women who consume approximately one to two servings of soy food each day are not isolated soy supplements, you want to avoid those. But if you eat soy food each day, you actually have a reduced risk of breast cancer recurrence, or being diagnosed with the disease. And moreover, these studies, there were three studies in China and two in the US that provided further evidence that women who ate more soy have better survival after breast cancer diagnosis than those who ate the least soy. Laura Carfang 06:20 Karla, as always, this has been so helpful, I am definitely going to look on PubMed, and I will link to some of these studies in the show notes below so that our readers and listeners will have access to this information. Thank you again, for everything that you do for our breast cancer community. It is always a pleasure having you on the podcast. Thank you for tuning in and listen to our podcast. If you would like to find out more about our organization and upcoming events and ways to connect. You can find out more by visiting our website at surviving breast cancer.org. And we'd like to acknowledge that all of the information on our podcast is from personal experiences and it is not a substitute for professional medical advice. You should always consult your medical care team. If you're looking for specific topics or would like to be a guest on our show, feel free to contact me directly at Laura at surviving breast cancer.org. And of course, we have a couple social media handles you can follow us that as well. For example, surviving breast cancer org all one word, as well as our podcast specifically breast cancer conversations. Until next time, keep on thriving.
- From Stage 2 to Stage 4 Breast Cancer
By Guest Blogger, Abigail Johnston In January of 2017, at the ripe old age of 38 , I felt a lump in my left breast. I was tandem nursing my almost 4-year-old and almost 2-year-old at the time. I started taking herbs and saw my lactation consultant since I’d already had a few clogs. I always had an overabundance of breast milk, so much so that I donated over 25,000 ounces to a milk sharing group during my 4 years of nursing and pumping. My lactation consultant thought it was nothing but since the herbs weren’t working, she wanted me to see my PCP. My PCP is super chill and tandem nursed her kiddos, so she was not too concerned. Her comment was that she was 95% sure that it was nothing but since my mom was then a 14-year breast cancer survivor and I’d never had a mammogram, she sent me for a mammogram and a diagnostic ultrasound. Since we were expecting some difficulty with my dense and milk filled gigantic breasts (seriously, I went from barely a B to at least a DD while nursing and I’m 5’2”), she told me not to let the radiologist do a biopsy if there was any suspicion but to call her for a referral to a specialist. I didn’t know what to expect at the mammogram appointment but I certainly did not except to drench the machine in milk. Also, it HURT!!! The tech wasn’t very happy about milk everywhere but seriously, that crazy machine HURT!! I pumped before the scan and pumped again during a break and we got some pictures. Tech didn’t have a poker face, so I knew something was up. After the diagnostic ultrasound, the radiologist came in and wanted to do a biopsy right then. Since my PCP had already told me to call her after the mammogram, I explained that and they freaked. I was taken to three different people, including a social worker before they finally let me leave AMA. It was after office hours at this point and I left a message with my PCP’s answering service on the way home. It was a Thursday. She called me back that Friday morning after having looked at the scans and the report. I think the only explanation at this point for the fact that I was not freaking out was that I was in denial. I was convinced that everything was fine and went to the appointment with the surgeon the following Monday without trepidation. In hindsight that was pretty naive but I am thankful for a few more months without the weight of cancer in my life. The surgeon did the biopsy in her office that day, also not what I was expecting and we left with some amount of concern to wait for the results. I leaked milk from the biopsied area (at around 10 o’clock right outside the aureola on my left breast) for about a week and my kiddos thought that was pretty funny. The crazy bruising wasn’t as funny and the anxiety even less. On March 8, 2017 , we got the results of the biopsies. The suspicious lymph nodes were just full of milk but the lump in my left breast was breast cancer. Invasive Ductal Carcinoma which was ER/PR+ and HER2-. I later found out I am BRCA- but then so was my mother. At that point, we met with a medical oncologist and a radiation oncologist and started the process of drying up my milk. It was tremendously difficult and abruptly weaning both Boys was just plain awful. I felt like I was walking around with a bomb inside me. I was limping at this point, favoring my right leg — I’m not a complainer and I simply didn’t bring It up. In hindsight, that wasn’t the smartest move. We decided to do a lumpectomy and my surgery was on April 11, 2017. The surgeon was able to get clear margins and I was considered node negative since only one of the 4 sentinel nodes had some trace cancer cells. Trace cancer cells means less than 200. We hoped I would just need radiation and again waited for the oncotype results. Still naively hoping we were in the clear. Original staging was 2b. Oncotype score came back in the high side of the gray range and so we had to adjust our thinking to include chemo. Original plan was 4 rounds of AC and then 12 of Taxol. I started chemo and in the haze of the day after the first chemo treatment nicknamed the “red devil,” my medical oncologist called to say that something was wrong with my blood-work (he didn’t say tumor markers then) and we’d need to do more tests. Still naive, I didn’t get upset or exercised and I went in for a bone scan and CT scans within a few days. Took nearly a whole day and when we got the call the next morning that we needed to come in, didn’t matter what time, just come, and a sense of doom began to settle over us. The weight of all that was and all that might be was stifling. The next day, June 22, 2017 , we went to my medical oncologist’s office to find out that the cancer had spread, not through my lymph nodes, but through my blood to take up residence in all of my bones. That limp I mentioned earlier, turns out I had a 5-cm tumor in the middle of my right femur. My organs were and are clear of mets so far. My husband had insisted on coming to my appointment and we both cried and cried and cried. Life as we knew it had already shifted and now it had taken a dark turn. About a week later, on June 30th after having multiple MRIs and skeletal studies, an Orthopedic surgeon put a titanium rod inside each femur secured by 4 screws each. We also did some additional genetic testing and found out that I’m positive for the ATM mutation. I kept going with AC but we decided to leave Taxol for later. I did 10 days of radiation on my legs and my back (big lesion at L2) in July as soon as I was healed enough from the surgery. I had a full hysterectomy on September 18, 2017 and I started Ibrance and Letrozole in August, 2017 . For now, all of my mets have shrunk and I’m getting more and more limber each day. I’ve added yoga to my routine, which is really helping with flexibility. In October 2017 , we finished closing up my office and moved to Miami to live with my parents for the help and support. I’ve been able to access disability benefits and I’m trying to figure out what’s next. Becoming educated and keeping up on research as much as possible has become a little like a full-time job! I’ve added acupuncture, chiropractic, supplements, diet changes and medical marijuana to my regimen. I like to say that we’re combining the best of Eastern and Western medicine the best we can. Recently, I’ve developed heterotopic ossification in each thigh, which basically means that I have bone growing inside each of my thigh muscles. None of the bone pain I’ve been managing prepares me for this much pain. We’re working on building muscle to cushion the growing bone and there may be more surgery in my future, once the ossifications stop growing. My very first thought in June when we got the news was that I wanted to spend as much time as possible with my children. That’s what I’m doing. I’m spending time with my family and creating a new life and memories for as long as we have. Our focus is living in the present and working to maximize the joy of the time we have. I’ve got boxes started for both Boys and I’ve been working on letters and cards and mementos. I worked with a nonprofit recently called Thru My Eyes to create a video for my children to watch after I’m gone. I’ve also started a box for my husband to stash important reminders and letters. Thinking about leaving my kids sometimes leaves me paralyzed but it also clarifies things. While I’m still able, I get out of bed each day and spend as much time as I can with them. When I can’t get out of bed because of all the side effects I deal with daily, we get lots of snuggles and cuddles. This is our life now, in all it’s beautiful mess.
- The Port and Losing My Hair
So many updates to share! Everything about cancer is new to me. There is so much about my body that I know nothing about. Nor do I understand how this is all going to work. I am going through treatment, trying to understand it all, and process all at the same time! It can certainly be overwhelming! Today, I am focusing on two topics. The decision to get my port placed, and an update on my hair situation! I was in shock when I found out that I was going to have my port placed in the morning and a few hours later receive my first chemo treatment. While this sounded rushed to me, it was pretty standard practice. However, the moment I was on the stretcher in the hospital, being wheeled into the operating room, the tears came streaming. I’ve never had to have surgery before and when I came into the operating room, it was just like what you would expect from seeing ER or House on T.V: Lots of people in scrubs, face masks, sterile table, big bright lights, even a two-way mirror where others are monitoring computer screens. If this isn’t your normal, it is definitely scary! From there, I was brought up to the infusion center to receive my first round of chemo. Again, being my first time, everything is so overwhelming! The Adriamycin and Cytoxan came in a bag that had the yellow skull symbol on it reminding me that the contents inside the bag were dangerous and toxic. Nurses had gray gloves and were handling the IV and chemicals with such care and I was just sitting there waiting for these new drugs to start coursing through my body. A very overwhelming day! But I survived and I am here to tell you all about it!
- It's Just The Beginning: When A Cancer Patient Finishes Treatment
Guest Blogger: Lucy Wright Before I faced cancer I always naively believed that a survivor was someone who defeated something and that was that! I have now come to realize there is so much more that comes with being a survivor, whether it be mentally or physically. I want to share something with you that made me want to write this piece today. I was in hospital waiting to see my plastic surgeon and a lady came and sat next to me. We got talking and people who know me know I am very open about my journey. This lady told me about her sister who passed away from lung cancer and like many others, she said I was lucky to still be here and survive the disease. When this was first said to me not long after my treatment, I didn't think much of it but now I am 20 months on from my last chemo and I find this hard to digest!! Surviving something like cancer is not lucky. I am of the belief that it's the outcome of treatment and how positive you are. But there is nothing lucky about having to endure chemo, face life changing surgery and radiotherapy. Yes, I am clear of cancer but I had to face the toughest time in my life to get to this point and that was not due to luck. I have never been lucky, as I also lost my mum and dad within 9 days of each other when I was of only 17/18 (both sides of my 18th birthday). When cancer patients finish treatment, it is not the end, this is just the beginning for a survivor! Not only do you have to get over the physical effects of treatment, whether it be chemo, radiotherapy or surgery but you also have the turmoil of dealing with the effects cancer has on your mental state. There is always the " What if's' '. My mental state is pretty positive, maybe not sane but I manage to keep my thoughts on track. When I have a moment of "what if my cancer comes back, what if I die, how will Nevaeh (my daughter) cope if I am not here, will I ever think how I used to?" My Macmillan nurse told me it is normal to have these thoughts and taught me a great way of dealing with this: If the thoughts enter my head, I need to take a minute and visit my demons. I have to let myself have the minute but then put them in a box and forget about them until next time they creep up. This technique really works for me, I might look like a crazy lady for a few minutes but what's new! I find I constantly worry when I get a cough or an ache! Could this be my cancer returning or a new cancer? It never stops, the checking of my breasts (I can now say breasts) and I am mentally exhausted but I just plod along. Survivors will always be over vigilant when it comes to their health. Before my diagnosis, if I got a cough I would think it's a cold, now I contemplate whether this could be a symptom of a cancer! We just have to channel this in a healthy way and not drive our state of minds into darkness. When you have faced death, your whole world shifts and your outlook on life changes for the better. This could be the people you associate with, how you deal with certain situations and just living your best life. You will cut people out, you will want to face your fears and just appreciate every minute you breath this air on earth. Being a survivor also means annual check ups, which in turn you have to deal with Scanxiety . Although everything might be fine, the worry of something showing up weighs heavy on your mind and also your body physically. I get no sleep for many nights leading up to my scans, which I am graced with 50 shades of dark circles under my eyes. The future for a cancer survivor can be masked by negative thoughts but on the flip side we want to make the most of the second chance we have struggled to fight for. It's an ongoing battle that we have to live with for the rest of our lives but I will always fight, as will many others! So to be a survivor, it's not luck, it's proof that something was sent our way to kill us but determination, strength, grit and positivity prevailed. Much love Lucy You can follow Lucy on IG @lifeorjustlucyisms Or through her website: Www.lifeorjustlucyisms.co.uk
- Advice From a Survivor
By Store My Tumor The most common statement we receive from people we talk to is… I wish I knew about the importance of preserving cancer cells alive at the time of my surgery. Why didn't my doctor talk to me about the option of storing my tumor tissue? Doesn't he understand my survival is everything? I have a family that I need to be here for! To answer that question- most doctors are always going to go with the standard of care treatment- surgery, chemo and radiation. They have no time and this is what they are taught to do. Anything aside from that is not known to them and they don’t want to go outside the norm. This is why a patient must take control of their own treatment. If you have a doctor that you feel you aren’t getting the right answers from, then find a new doctor. If you feel your treatment plan isn’t right for you, then ask questions. You need to be a part of your treatment plan so that you feel included in your survival and can help to ensure it. The standard of care is okay for some people but not for all. If you feel you want to take control of your treatment and personalize a treatment that is just for you then you need to do some research. StoreMyTumor can help you preserve your cancer cells and tissue alive and initiate a number of advanced diagnostics and personalized immunotherapies for example. Did you know? Hospitals routinely discard tumors post-surgery, or they may save a very small piece of the tumor preserved in paraffin, which will not keep the cells alive. StoreMyTumor preserves your cancer cells and tissue in a live, viable format. Patients can store tissue collected from a surgery or biopsies, or fluid from ascites drainage (paracentesis). Call them if you are having a procedure that may involve removing tumors or cancer cells. What are the preserved live cells or tissue useful for you ask? · Sensitivity Testing (diagnostic) - tests which drug or combination is most effective to target the tumor. Can be done for chemo therapeutic agents only, or a wider range of drugs that include chemo, targeted, and immunotherapy. This eliminates the trial and error process doctors go through and the severe side effects that accompany the wrong chemo and drug. Applies to all indications and requires Viable tumor tissue. · Genomic Sequencing (diagnostic) - checks for hundreds of mutations on the tumor and matches the right drug to mutations expressed by the tumor. Applies to all indications and requires formalin or paraffin tissue (fixed/dead). · Personalized Vaccines (immunotherapy) - stimulates the immune system to recognize and fight the cancer cells. Good to clean the body from residual cancer cells after surgery/chemo. Applies to all indications. Available in trials across the USA and internationally. Applies to all indications and requires Viable tumor tissue. · Adoptive T-cell Transfers (immunotherapy) - multiplies the army of killer T-cells that already recognize the tumor to dramatically boost the immune system’s ability to destroy the tumor. Available in trials across the USA and internationally. Applies to all indications and requires Viable tumor tissue. Personalized medicine is transforming our thinking about designing effective treatments. If you have questions, you can also set up a time for them to give you a call . Knowledge is Power! Know All Your Options! Take control! Thanks to StoreMyTumor for sharing this blog with out community!
- Don't Sweat the Small Stuff
By Caitlin Edmunds, Contributing Editor Cancer sucks and there's no denying it. It took a lot from me... it took my energy, my attention and focus on most days if not all days, my naivety, my time and a whole lot of my hair (which in all honesty was one of the hardest parts). But it also gave me a new found appreciation for each and every day. To stop and enjoy all the little things and realize that life is too short to be mad at the crappy driver in front of you or stress over the one email that you didn't get to but meant to before leaving the office. It taught me that the human body is an incredible thing, and the amount of trauma and hardship it can endure and bounce back from is incredible. It taught me that I am way stronger than I ever gave myself credit for. But most importantly it showed me that my tribe is the best tribe. It was 234 days from diagnoses to my last day of active treatment... 130 cold cap changes, 120+ self injections, about 50 doctors appointments, 30 rounds of radiation, 25 blood draws, 20 doctors, 18 ultrasounds, 8 rounds of chemotherapy, 4 lymph nodes removed, 3 MRIs, 2 port surgeries, 1 full body PET scan, 1 CT scan, 1 egg retrieval surgery and 1 lumpectomy surgery. My life will never be the same and forever more will be split into BC and AC (thats after cancer, not Adriamycin for my cancer folks). Since I found my lump through an at home self-exam and have made it my ongoing mission to bring awareness and education to other young women out there. I am so lucky to have found so much love, support and inspiration throughout the entire cancer community, but especially the triple negative gals! Here is a link to my Caring Bridge site that I used to update family and friends: https://www.caringbridge.org/visit/caitlinedmunds/
- Insomniac: Stage IV
By Ilene Kaminsky Morning yawns and stretches its arms To part the curtains of night. Tired midwife to light from From her expectant horizon The earth inches towards her morning. Clean, cool fingers weave threads Of sweet perfumed wisteria and more Unnamable long forgotten blooms. Clean and combed through dew damp air. Buds nodding on their stems, Draw blood from my veins with thorns Like cat claws after a scare. Suddenly clouds burst and showers fall To save dry backyards and crops Now cut away from the view unguarded From natures reach over treetops. Lost years and fences already raised Desperate for mending and tattered. Puddled earth evicts worried worms, Plucked by late rising birds from their Broken homes. While in my solitary confinement, Within an escapable white picket fenced Yard, I wave farewell to school busses And to the workers who clean up the world. Alone to remember cubes and corners Push pinned photos, plaques of platitudes, Email boxes and bustling buildings Where tight schedules and bright slides Bore like radiation into the heads of Departments of the thoughtless and benign. My wooden porch now a port of call for Rain long overdue for such late afternoons. I’m stuck in an everlasting April spring day. As sprinklers timed soak the lawn The sun’s last rays motion with Long, scolding fingers at Now unknowable faded faces Trapped like tonight’s fish for supper In this morning’s papers. Laid out on a communal table Where wisdom and innocence Convene to discuss the current Events of still births and deaths. Hands engaged with wild gestures Waving forks and spoons for effect - Interrupting pointless chatter to flatter And cut meat from a fatted calf. Everyone silenced by politeness, Sliced right through the art of the matter. The evening’s news flickers Behind shades of taffeta mmllooookmm Hiding shadow boxes inside windows. Like a sober fly in a glass of whiskey Wet wings legs spinning drowned The hands of its god take it down. I walk with solitude as she unwraps Her arms thick with compassion Beckoning me inside for consolation. Using one wave to cast away Anyone who might see me crying. We sit together on a dark park bench Watching every creature under suburban Skies that all fit on a single broom stick. If no one bothers then no one counts Things yet unseen, like angels Atop a pin head. Yet we must believe That stars still sparkle until the dark unveils Who’s home and left behind To sing unearthly cries of grief. Arched branches bow green Soft leaves shake and flow From willows left weeping While night whispers to me: Please save us all. As the trees fade to black, Wind whips at my face. From the fringes, howls Break into my mind. I can no longer breathe hidden and weak In the between With these heavier things.

























