014: Do You Believe in Miracles with Nicole Body

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SHOW NOTES:

And we’re back with Episode 2 of the Intersection of Cancer and Life!

Where we left off, a few weeks after I started the clinical trial drug, I began to feel really terrible. I wasn’t sure what was happening - after all, I have a three-year-old in preschool and it was January, the height of the cold season. Around that time, for whatever reason, I was looking through some of my recent test results. I hadn’t really reviewed them in depth, since there were so many different scans and, honestly, I felt so overwhelmed with the on-boarding process for the clinical trial. I figured that the scans weren’t going to be any different since they were two weeks apart, and my doctors had noted that they were unchanged. And I hadn’t heard anything about the bone biopsy, so I assumed that there was nothing particularly concerning with those as well.

Well, I noticed some notes on my bone biopsy pathology report from January 2019 that seemed a little, shall we say, alarming. I mentioned that my cancer was estrogen receptor positive - that means that my cancer is particularly receptive to hormone therapy. That was the reason for having a hysterectomy last August - to remove all of the hormones from my body. As I was reading the bone biopsy report from January, I noticed that my cancer’s estrogen sensitivity had dropped precipitously - from around 95% to close to nothing. Now, this might not seem like a big deal. It may even sound like a good thing - things are changing, right? Except it’s not a good thing. One of the challenges in treatment for metastatic breast cancer is the manner in which it can mutate and therefore render treatments ineffective. There are a number of solid treatment options for metastatic breast cancer - IF the cancer is responsive to the therapy. And cancer that doesn’t have hormone sensitivity isn’t going to be responsive to hormone therapy. And if it’s not going to be responsive to the treatment I’m currently on, what’s going to happen?

After I completely freaked the hell out, I started doing some frantic research. And anyone who has been diagnosed by Dr. Google knows that it’s never a good thing. I discovered that mutations in metastatic breast cancer are not uncommon at all - approximately 20-30% of people deal with a mutation that causes a significant shift in the way their disease is treated. This is a HUGE issue in research, and yet, it’s not really talked about - at least, it wasn’t really on my radar. On top of everything else, I had just had a second bone biopsy, as part of the clinical trial protocol, but the pathology results weren’t available yet. My December spiral was nothing compared to the black hole I found myself in during the month of February.

A year ago, I had just started my first line of treatment and anticipated the first scans. I was feeling better, and I had a feeling the scans would be ok. This was all part of understanding my new normal. I told myself that I had a long road ahead of me. But this year, after experiencing one failed drug, I feel very different. I’m coming up on 18 months (in May) of life with metastatic breast cancer. For a disease that has a life expectancy hovering around 2-3 years, 18 months feels like I’m starting to walk on thin ice, no longer on solid ground. Time feels like it’s starting to slip away much, much faster.

So we waited. We waited for my first set of scans on the clinical trial. We waited for the pathology for the bone biopsy. We waited, and hoped for the best, but expected the worst. I was so sure that my scans were going to show progression, that I was going to be facing yet another new line of treatment, that I didn’t even want to call for my results. When the nurse came on the other end of the line, I steeled myself, ready for the bad news.

The scans were stable, she said. You can stay on the trial for another two months. And better yet, the bone pathology showed a much more appropriate estrogen sensitivity. She explained that sometimes the readings can be low if there isn’t a lot of tumors present in the sample.

I had been holding my breath for so many weeks, and finally, I started to exhale. I kept repeating the news to myself, in disbelief. Stable. And even better, the bone sample didn’t even have a ton of tumor in it. So now, I have an 8 week (hopefully) lease on life until my next set of scans. If I’ve learned anything over the past year, it’s that things can change in a moments notice. But also, as I learned from this episode’s guest, that those changes can surprise you in ways you never believed possible.

My guest today is Nicole Body, a stage 3 sarcoma survivor. She is the creator and author of her website and blog, Sparkly Survivor, where she shares experiences during treatment and post-treatment while sharing words of encouragement on how to live life joyfully at the crossroads of faith and cancer. In July 2017, Nicole was diagnosed with stage 3 Undifferentiated Pleomorphic Sarcoma. Her gallbladder was failing, and she underwent 4 rounds of chemotherapy to shrink her cancer. Two weeks after her last scan, which still showed sarcoma, she underwent major surgery, with plans to attempt the Whipple procedure. However, after making a 9-inch incision down her abdomen, her doctors couldn't find cancer anywhere. She is nearly a year cancer-free. As she says, it was a miracle. Nicole has found her voice as a writer for the I Had Cancer blog and her cancer story has appeared in the MD Anderson Cancer Center blog, Cancerwise. She hopes to publish the book she just finished writing about her journey soon and strives daily to bring encouragement to others who have battled cancer.

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Nicole Body is a stage 3 sarcoma survivor, and the creator and author of her website and blog, Sparkly Survivor, where she shares experiences during treatment and post-treatment while sharing words of encouragement on how to live life joyfully at the crossroads of faith and cancer. In July 2017, Nicole was diagnosed with stage 3 Undifferentiated Pleomorphic Sarcoma. Her gallbladder was failing, and she underwent 4 rounds of chemotherapy to shrink her cancer. Two weeks after her last scan, which still showed sarcoma, she underwent major surgery, with plans to attempt the Whipple procedure. However, after making a 9-inch incision down her abdomen, her doctors couldn't find cancer anywhere. She is nearly a year cancer-free. As she says, it was a miracle. Nicole has found her voice as a writer for the I Had Cancer blog and her cancer story has appeared in the MD Anderson Cancer Center blog, Cancerwise. She hopes to publish the book she just finished writing about her journey soon and strives daily to bring encouragement to others who have battled cancer.

Find Nicole online:

Blog/Website

Instagram

Facebook

Twitter

Email

Youtube: Nicole Body’s Cancer Journey

Pinterest

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013: Stage IV Needs More with METUP President Susan Rahn

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SHOW NOTES:

Welcome back to Season 2 of the Intersection of Cancer and Life. It feels a little crazy to be back behind the microphone again - so much has happened in the last couple of months. When season 1 finished, I had just received my December PET scan results, which weren’t good. The scan showed progression in my bone lesions (translation - the breast cancer cell pockets in my bones that had been kept at bay by my treatment were no longer responding to my treatment, and had spread). This meant that I needed to switch treatments, and fairly fast. It was also the week before Christmas, and my family and I had planned a relaxing week away with my in-laws on their farm. But yet again, cancer had other plans.

Fortunately, I suppose, my Oncologist was able to find a clinical trial that she was very excited about, and I was accepted into the trial. I signed the consent forms to participate in the trial on December 21st. It felt fitting that it was the longest night of the year because I found myself in one of the darkest places I had ever known.

When we came back from our trip on New Years Eve (and I was a real peach to be around for that whole week, let me tell you), instead of planning a festive get-together to ring in 2019, I spent the majority of the day undergoing more testing - this time, a CT scan and a bone scan - as part of the clinical trial intake. Two days later, more tests: a physical, an EKG, and a meeting with the clinical trial team. A few more days later, a bone biopsy, then finally, I was cleared to start the trial drug.

Having not had any prior experiences with clinical trials, I didn’t know what to expect. However, I quickly learned that with these trials, it’s one foot in front of the other, and you’ll know what you know when you know it, and not a moment too soon. In other words, yet another lesson in patience from the breast cancer gods. Fucking patience. I felt like I had been in a holding pattern for close to a month before I was finally able to start the trial drug (as a side note, this is a phase 1B dosing trial, which means that there is no placebo. If that sounds like gibberish to you, don’t worry - it just means that it’s an early stage trial and I’m definitely on the new drug, not a sugar pill or anything) but eventually, I was given the green light by the clinical trial and started the new medication.

You might remember from last season, but if you don’t, my first line of treatment was an oral targeted therapy - a drug called Ibrance, in combination with a second drug that blocked hormone receptors, called letrozole. This is a pretty standard treatment for estrogen positive metastatic breast cancer, particularly for those with bone metastases like mine. However, it’s not as common to jump from the first line of treatment to a clinical trial, and, because of this, we had no idea what to expect.

In navigating the maze of metastatic breast cancer, today’s interview feels particularly important, especially to me, as I recorded this episode last December, the day after my scan - while I waited for the results that I would find showed progression in my disease. My guest is Susan Rahn, a vehement advocate for both Metastatic Breast Cancer and Medical Aid in Dying. Susan was diagnosed with metastatic breast cancer de novo in August 2013, after experiencing back pain that she originally suspected to be a kidney infection. She is a graduate of the Living Beyond Breast Cancer’s Hear My Voice advocacy training and a public speaker. Susan has been meeting with lawmakers about legislation and bills that will positively impact the metastatic breast cancer community and bring Medical Aid in Dying laws to New York State. Currently, Susan is the President of METUP, a direct action advocacy organization founded by Beth Caldwell. METUP pushes to change the landscape of metastatic breast cancer by amplifying the need for improved healthcare access, research, and funding for metastatic disease.

Referenced in the Episode:

Metup.org

A 2694: Proposed Legislation in New York for  Medical Aid in Dying

San Antonio Breast Cancer Symposium

Find Susan online:

Twitter

Facebook

Instagram

Stickit2Stage4.com

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Season Two Teaser!

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SHOW NOTES:

Throughout Season one of The Intersection of Cancer and Life, we met some amazing people- people whose diagnosis was a catalyst for incredible advocacy, community building, and even entrepreneurship.

Now, in Season 2, we have more fantastic guests whose stories are as dynamic as they are, but we’re also going to dig a bit deeper into those cancer conversations that I mentioned because the intersection of cancer and life isn’t a static place.

We don’t stand still, we keep moving forward despite, or maybe because of the places we’ve been. 

So welcome to Season 2 of the Intersection of Cancer and Life - thanks for being here with me. 

Stay tuned for new episodes starting next Thursday!

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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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