012: Ellis Emerson

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SHOW NOTES:

It's hard to believe this is episode 12 - the last episode of Season 1of the Intersection of Cancer and Life. Thank you all so much for following along and listening to our show. Thank you too, to our incredible guests this season: Nora McMahon, Justin Birckbichler, Marianne Duquette Cuozzo, Robin Browne, Racheli Alkobey, Emily Hopper, Annelise Cohon, Abigail Johnston, Dana Donofree, Wendy Chioji, Annmarie Otis, and today's guest, Ellis Emerson. 

When I started this podcast, I had no idea what I was getting myself into. I'm not a naturally comfortable speaker - if you've seen my blog, you know I am much more comfortable writing. That said, my single new year's resolution for 2018 was to do things that scared me, that challenged me, and that pushed me outside of my comfort zone. This podcast has been an amazing manifestation of that. I am forever grateful to Mouth Off Network, Pablo Hernandez, Jamie Pham, and Brady Tuazon, for taking a chance on me. We will be back for Season 2 in a few weeks, and I'm really excited for so many of these guests, interviews, and conversations. 

I can’t think of a better guest than Ellis Emerson to wrap up Season 1. Ellis is a mother, runner, and cancer survivor who was diagnosed with Stage 3 Melanoma in October 2017, right after her 32nd birthday. After her diagnosis, Ellis did not want to let one second of her life get away from her. In a little over a year, Ellis has thrown the first pitch at a Major League Baseball game, went cliff jumping in Puerto Rico, took a flying lesson in Iceland, and also got married. But most amazingly, in July of 2018, she ran 135 miles across Death Valley California as part of the Badwater Ultramarathon. I’m so excited to welcome Ellis to episode 12, and the season 1 finale of the Intersection of Cancer and life. 

Here's where to find Ellis on social media: 

Instagram: @littlejenjenthatcould 

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011: Annmarie Otis (founder of Stupid Dumb Breast Cancer)

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SHOW NOTES:

Episode 11 of the Intersection of Cancer and Life features Annmarie Otis, the founder of Stupid Dumb Breast Cancer. Annmarie was diagnosed with Stage I breast cancer in 2012, and Stupid Dumb Breast Cancer is her fierce and unconventional initiative to promote awareness, early detection, and advocacy surrounding breast cancer, with a special focus on how the disease impacts younger people. On behalf of Stupid Dumb Breast Cancer, Annmarie has been featured in area publications, appeared on TV, local radio, and Huff Post Live, and hosts a series of monthly events through various cancer organizations. Since its inception in 2012, Stupid Dumb Breast Cancer has raised and contributed over $750,000 to a variety of breast cancer organizations, including Stand Up to Cancer, Duke Hospital, Wilmot Cancer Center, the Upstate Cancer Center, CancerConnects, Personal P.Ink, and the Maureen’s Hope Foundation.

Annmarie communicates regularly with a growing network of patients, their loved ones, and supporters through a variety of social media, where she candidly shares her thoughts and experiences and welcomes others to join the conversation, discover their own strengths, and discuss their journeys. 

Here's where to find Annmarie on social media:
Website: Stupid Dumb Breast Cancer
Instagram: @stupiddumbbreastcancer
Facebook: @stupiddumbbreastcancer
Twitter: @annmarieg4

As I mentioned in the show introduction, my dear friend Rebecca Scheinkman died on Tuesday, December 18th, 2018. Underneath her continuously sunny demeanor, Rebecca was a fierce advocate, raising over $100,000 for breast cancer research through the Breast Cancer Research Foundation. Until only a few days before she died, while navigating brain metastases with unfathomable cognitive symptoms, Rebecca continued to fundraise and advocate for metastatic breast cancer research. She is a bright light that will be missed tremendously. 

In addition to Rebecca's death, after processing my scan results, I am fired up. There is so much more work to be done with regards to recognition of metastatic breast cancer, and metastatic cancers as a whole. We still live in a world in which one in eight women will face a breast cancer diagnosis in her lifetime, and approximately 30% of those women will develop a metastatic recurrence. These numbers are unacceptable. We do not get to control so many of the things that happen to us in our lives. But we get to control our narratives, our responses, and the paths we choose when we are faced with challenges. As John Donne wrote in 1623, "therefore never send to know for whom the bell tolls; it tolls for thee." If you are wondering when the time will be right to move forward, to find space to work for something meaningful, the time is right now.

Please consider making a donation to one of the following organizations:
Metavivor- to fund metastatic breast cancer research
The Cancer Couch Foundation- to fund metastatic breast cancer research
Breast Cancer Research Foundation- in memory of Rebecca Scheinkman 
METUP- to provide financial support for policy advocacy and structural change

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010: Wendy Chioji

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SHOW NOTES:

"Fear is darkness, and education is light." -Wendy Chioji

Episode 10 of the Intersection of Cancer and Life features Wendy Chioji, a freelance television producer, six-time Ironman, and triathlete, who has tackled everything in her life, including her three cancer diagnoses, with the same motto: "Just say yes." 

Wendy's first round with cancer came in 2001 at age 39, when she was diagnosed with stage II breast cancer. She underwent chemo and surgery, then participated in a clinical trial of the drug Taxotere. In 2013, Wendy was diagnosed with stage II Thymic Carcinoma, a rare cancer that affects the Thymic gland, an organ that serves as part of the lymphatic system and lies under the breastbone in the upper chest. She underwent chemo and radiation, and then, after a recurrence of the Thymic cancer, began a series of clinical trials.

Wendy is not only an incredible advocate for clinical trials but a fantastic source of information about all aspects of the clinical trial process. Not only have these trials extended her life, but Wendy walks us through the ins and outs of how to navigate a clinical trial, the importance of these trials, and debunks many commonly-held myths about clinical trials. In addition, Wendy talks candidly about her life with cancer, the subsequent health challenges that she navigates as a result of her treatments, and her fundraising missions with Pelotonia, an organization that funds clinical trials for the James Cancer Center in Columbus, Ohio. 

Links from the show:

Clinical Trials

Southwest Airlines Medical Transportation Grants

FDA Compassionate Use Program 

Here's where to fin

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009: Dana Donofree

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SHOW NOTES:

"Holy shit, I need to make bras." - Dana Donofree

Episode 9 of the Intersection of Cancer and Life features an incredible guest: Dana Donofree. Dana is best known as the founder and creator of AnaOno, a lingerie company specifically for women navigating breast cancer. I first met Dana in the spring of 2018 at the Living Beyond Breast Cancer Metastatic Conference in Philadelphia, PA, and was immediately struck with her passion for an unwavering commitment to the breast cancer community.   

Dana was diagnosed with breast cancer at age 27 and founded AnaOno out of her own necessity and desire for pretty, sexy, beautiful lingerie. After a bilateral mastectomy with implant reconstruction, her own bras no longer fit and she was certain there must be more than just sports bras and camisoles (as nothing in the traditional lingerie market fit her surgically-altered body anymore). With a degree in fashion design from Savannah College of Art and Design, and a quite successful fashion industry career, she took her 10+ years experience and put it toward designing, launching and growing AnaOno.

Dana is very active in the breast cancer community and is involved with several non-profits, including serving on the Living Beyond Breast Cancer board and continuing to be an outspoken advocate for Metavivor. Her story has been featured on USA Today, The Today Show, HuffPost, New York Times, INStyle, and many others. However, she is most proud of being able to make a difference in the lives of women worldwide and is honored to continue to spread her mission of beauty, confidence, and empowerment.  

Dana and I talked about her diagnosis, the challenges she faced throughout treatment, and how she found herself designing and making bras. We get real about the struggle to navigate the need for both positivities in the face of our challenges and recognizing the harsh reality of life with breast cancer. Dana also talks about the meteoric uprising of AnaOno, including a recent expansion that made AnaOno bras available through Soma Intimates and gives a little teaser about the possibility of another collaboration with Project #Cancerland for the 2019 New York Fashion Week.    UPDATE: The CancerlandXAnaOno show is back for NYFW 2019! The show will be taking place on February 10, 2019, and all proceeds will benefit Metavivor.   

Here's where to find Dana on social media: 

AnaOno Website

Twitter: @AnaOnoIntimates

Instagram: @AnaOnoIntimates

Facebook: @AnaOnoIntimates

YouTube: @AnaOnoIntimates  

Note: In the show intro, I stated that Project #Cancerland's website was cancerland.com, which is incorrect. Project #Cancerland's website is projectcancerland.org

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008: Abigail Johnston

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SHOW NOTES:

Episode 8 of the Intersection of Cancer and Life is a special episode for me - at the time it airs, it will have been a year since my diagnosis of metastatic breast cancer. In this episode, I talk with Abigail Johnston, a fellow lawyer, mother, and metastatic breast cancer thriver. Before cancer, Abigail was an accomplished lawyer in the central Florida area, practicing for over fifteen years and building a life with her husband and two boys. Once she was diagnosed with stage IV metastatic breast cancer, Abigail closed her firm to be able to spend more time with her family. Life for Abigail is full of doctors appointments, research, and advocacy within and for the metastatic breast cancer community as well as family time. As part of her advocacy efforts, Abigail started a program called Connect IV Legal Services, in which she connects metastatic cancer patients with lawyers, to help them address legal issues such as advance directives, and will drafting, among other things. 

In this episode, Abigail and I mention a few things I want to further explain:

Metastatic breast cancer that is diagnosed de novo means that it was never early-stage cancer, and was diagnosed as metastatic before any surgery or treatment has taken place. Both Abigail and I were diagnosed de novo

We also talk about some legal documents that you may not be familiar with, including Wills, Power of Attorney, Health Care Proxy, and living will. 

A Will is a document in which you pass on all of your possessions to a person or people after you die. However, a will does not only do that but can dictate things such as the creation of a trust or the guardian for a minor child. 

A Health Care Proxy is the document that allows someone to have the power to make medical decisions on your behalf, in particular, if you are incapacitated and cannot do so yourself. 

A Power of Attorney is the document that allows someone to make financial and personal needs decisions on your behalf, should you be in a position where you are unable to do so yourself.

A Living Will is the document that indicates your preferences for resuscitation and life support, should you be in a position to need them. If you have heard the term “do not resuscitate” - this is the document that can allow someone to have that wish. This document allows people to have a say in how they want their end of life medical care handled, as so often when people are in these positions, they are unable to effectively communicate these wishes. 

Disclaimer: This episode has some audio issues at the beginning of the episode. 

Here's where to find Abigail on social media:

Twitter:@AMJohnston1315

Instagram: @amj1315

Connect IV Legal Services Facebook Page

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007: Annelise Cohon

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SHOW NOTES:

Episode 7 of the Intersection of Cancer and Life features one of my wonderful college friends, Annelise Cohon. Anna is an education specialist and innovative leader, with more than eight years of professional experience in advancing quality education for all children. She is passionate about the intersection of education and health. She is driven to ensure that all students have the social and emotional support needed to be successful.

Shortly after my own cancer diagnosis, Anna reached out to me and shared her own cancer story. Hearing her experience gave me the first beginnings of community in the world of cancer, and she and I have been able to reconnect over our shared health challenges. In this episode, Anna talks publicly for one of the first times about her thyroid cancer diagnosis at age 30, subsequent recurrence the following year, as well as how it has both challenged her and given her the opportunity to find new focus on helping kids who have been impacted by trauma and share her love of yoga and mindfulness with others.

In 2015, Anna experienced a panic attack, and at that time, the doctor found a few nodules in her thyroid. After multiple ultrasounds and needle biopsies, she underwent a total thyroidectomy. In April 2016, while Anna and her husband were planning to travel the world for a year, an ultrasound revealed that her thyroid cancer had returned. She underwent another surgery and radioactive iodine treatment, and her trip was canceled. Her recurrence showed her that she was not getting the support that she needed, and she sought out a more specialized, experienced team, teaching her how to be a better advocate for her health.

Having her thyroid removed changed a lot of things in Anna’s life and forced her to focus on her health and herself. While the experience was incredibly hard, scary and humbling and she will be on medication for the rest of her life, this experience has pushed her to focus on the things and people that matter most to her.

Anna and I had the opportunity to discuss the importance of finding our own voices as both women and patients in order to advocate for our own health needs. We talked about so many of the unexpected turns that life has taken us, and how she has found so much space for herself as a children's yoga teacher.

Here’s where to find Anna on social media:

Twitter

LinkedIn

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006: Emily Hopper

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SHOW NOTES:

Episode 6 of the Intersection of Cancer and Life features Emily Hopper, the mama, artist, advocate, and breast cancer survivor behind alternative breast cancer awareness apparel brand, EMPOWERHAUS. She is also the founder of Flatties Unite, the popular Facebook group for women living with fewer than 2 breasts. Emily was diagnosed with stage III triple negative breast cancer at 31 years old, after being misdiagnosed 14 months earlier. Emily has recently completed 13 rounds of IV chemo, a double mastectomy with flat reconstruction, 30 rounds of radiation, and 8 cycles of oral chemotherapy and lives in Wisconsin with her husband and young daughter.

Emily and I talked a lot about the challenges of navigating a breast cancer diagnosis with young children, as well as the recent publicity surrounding the flat community, both from Catherine Guthrie's new book FLAT: Reclaiming my Body after Breast Cancer, and an article featured in Cosmopolitan Magazine detailing the rampant sexism in breast reconstruction decisions

As a special gift to listeners, EMPOWERHAUS is offering 15% off with the code EMPOWER15 - orders need to be in by November 30th in order to assure delivery in time for Christmas.

 

You can find Emily on social media here:

EMPOWERHAUS:

Website: www.empowerhaus.co

Instagram: @empowerhaus

Twitter: @empowerhausco

Facebook: @empowerhausco

Flatties Unite:

Facebook Group: Flatties Unite

Instagram: @flattiesunite

Twitter: @flattiesunite

Personal:

Website: Mrs. Emily Hopper

Instagram: @mrsemilyhopper

Twitter: @mrsemilyhopper

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005: Racheli Alkobey (Radiant Racheli)

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SHOW NOTES:

On this episode, we talk with Radiant Racheli Alkoby, who was diagnosed with Hodgkins Lymphoma at age 21, during her senior year of college. After her diagnosis, she started video blogging under the handle Radiant Racheli and recorded her entire diagnosis and treatment journey in it's most raw form. In her videos, she laughs, she dances, she cries and, most importantly, she maintains her mantra: "everything is going to be okay." Racheli endured 12 rounds of chemo and endured some harsh complications, including blood clots in her lungs and chronic lung toxicity due to one of her chemo treatment regimens. Racheli has continued to be an advocate for young adults with cancer for the last 2.5 years since she finished treatment. In addition, she is a newlywed, having gotten married in March of 2018.

You can find Radiant Racheli on social media here: 

Facebook - @radiantracheli
Instagram - @radiantrachel 
Youtube - Racheli Alkobey

Lymphoma News Today Article

Blood-Cancer.com

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004: Robin Browne (stage IV breast cancer survivor and co-host of the podcast “That’s the Spirit”)

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SHOW NOTES:

Robin Browne is 31 years old and is a stage IV breast cancer survivor and a regular contributor to Amy Poehler’s Smart Girls website. She's also the co-host of the podcast “That’s the Spirit” and is fascinated by all things spooky and dark. She has one cat and can usually be found watching reality TV in bed.

Robin currently partners with the Breast Cancer Research Foundation to assist with fundraising efforts: www.bcrf.org

Her writing for Amy Poehler's Smart Girls website can be found here: @robinmbrowne

Robin's Podcast, "That's the Spirit" can be found on SoundCloud and Apple Podcasts

Twitter: @robinmbrowne

Instagram: @robinmbrowne

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003: Marianne Duquette Cuozzo (artist, mother, three-time cancer survivor)

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SHOW NOTES:

Marianne Duquette Cuozzo is an artist, mother, three-time cancer survivor, and most of all, a dreamer! 

Marianne was first diagnosed with Hodgkins Lymphoma at age 28, as a newlywed, and was told that she could never have children. She felt very alone, as this was before the internet, and she knew no one with cancer. Her entire life, including her decorative painting business, was put on hold for treatment, and slowly, as she began to reclaim her life after treatment, she had a Lymphoma recurrence again at age 32.

She was treated with chemotherapy and joined a support group of other young people undergoing cancer treatment at the time. A number of years later, she was given the go-ahead to try to have a child, and her miracle baby, Leonardo, was born. He is now a freshman in college. In 2014, Marianne was diagnosed with breast cancer, a side effect of the mantle radiation she underwent in 1994 as part of her Lymphoma treatment.

She underwent a double mastectomy with reconstruction and chemotherapy, but after six infections, her implants failed and had to be removed. she is currently living flat, and has been a tremendous force for breast cancer advocacy, and for the flat movement in particular, and has found tremendous therapy and blessing in her art. 

In Memoriam - Maggie Van Duyn

Website:  www.marianneduquettecuozzo.com

Facebook: Marianne DuQuette Cuozzo Artist

Instagram: @Marianneduquettecuozzo9128

I Am Whole Documentary

New York Times Article - Going Flat

Breast Cancer Art Project

CBS Sunday Morning - Going Flat

NBC With Joan Lunden - Meet 3 women who decided against breast reconstruction after mastectomies

Survivornet

LymphaDivas HOPE Sleeve, designed by Marianne, to benefit METAvivor and Metastatic Breast Cancer Research

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