021: The In-Between Spaces of Motherhood with My Cancer Chic’s Anna Crollman

Anna+Crollman+-+Headshot.jpg
 

SHOW NOTES:

This is a special episode, one that talks about the in-between spaces of motherhood. With the upcoming Mother’s Day Holiday, we talk easily and often about the things that make motherhood - both the mother figures in our lives and our positions as mothers - remarkable and revered. We don’t talk about the in-between spaces of motherhood in such ways, leaving those spaces to wavering voices and hushed tones. Life with breast cancer further challenges any positions of either fertility or family expansion. Whether it is the moment we are robbed of the chance to have a child, be it the first child or second, or third, those losses are no less valid. Or it is the choice to have a child despite the life long challenge, and often, spectre, of cancer co-existing with one’s family. Whether it is a loss of a pregnancy in the first trimester, second, or third, or the unimaginable existence of the loss of a child. Those of us who exist on these roads feel the deeply solitary anguish of loss that recognizes that our roles in relationship to motherhood are not black and white, but tempered with shades of gray that vacillate with our emotions, positions, understanding, and grief.

My husband and I were trying to get pregnant with a second child when we learned of my breast cancer diagnosis. Nine months later, instead of welcoming a new human into our lives, I underwent a total hysterectomy, removing my ovaries, fallopian tubes, uterus, and cervix, which rendered me completely sterile, infertile, and in permanent menopause. While friends grow their families, my son, who is 3 and a half, asks when I will have another baby in my tummy, and if he can have a brother or sister. He would have been an incredible big brother, and my heart wells with tears that I can’t shed in front of him, as I explain to him that we can’t have any more babies in our family. He doesn’t understand, but my infertility will affect him for the rest of his life as he navigates the world as an only child. I carry immense pain with me, knowing that I cannot give him a sibling. It is not a pain that can be lessened or mitigated, but one that must be carried, adjusted throughout time to manage the burden so that it does not continuously cut too deep and leave marks that are too raw. But it never leaves.

This episode is dedicated to my guest today, Anna Crollman, her husband Mac, and their babies - babies lost, babies that may come into the world in the future, and the babies they hold in their heart. At the time we recorded this episode, Anna was undergoing a frozen embryo transfer in the hope of becoming pregnant. While the transfer was successful, Anna lost the baby around 7 weeks, her second loss after suffering a traumatic ectopic pregnancy in 2018. Anna and her husband anticipate moving forward with another transfer, as Anna can only be off hormone suppressants for a fixed period of time. This episode honors Anna’s space as a mother, and her motherhood, where she has been, where she exists now, and space she may occupy in the future, in whatever manner it holds for her. This episode is also dedicated to all of those people who are living the in-between spaces of motherhood, whose hearts carry empty space for hopes and dreams that have not manifested themselves in the manner they yearn for. I see you, I hear you, and I recognize your motherhood, in whatever ways you choose.

Anna is a blogger, breast cancer survivor, and motivational speaker specializing in wellness, beauty and style content. She uses her compelling experience of facing breast cancer in her twenties to inspire young women to overcome adversity with strength, confidence, and style. Anna founded and runs My Cancer Chic, a platform providing resources, inspiration, and community for your young women facing adversity.

Anna was diagnosed in July 2015 with stage IIB triple positive breast cancer despite having no family history of pre-menopausal breast cancer and no genetic mutations. She had a single mastectomy, fertility preservation, 6 rounds of TCH chemo, followed by a second mastectomy on the non-cancerous side. At that point she had implants put in and had them for 6-8 months, then had the implant exchange surgery, followed by revisions and fat grafting a year later. In January 2018 Anna went off Lupron and Femara - hormone-blocking drugs -  which she had been on since her diagnosis. She got pregnant in June, but sadly, that pregnancy ended in an ectopic pregnancy, requiring emergency surgery to remove one of Anna’s fallopian tubes. Anna and her husband began IVF with their frozen embryos shortly before we recorded this episode, and Anna became pregnant again, only to lose yet another baby in the first trimester. Despite all of these challenges, Anna has remained a beacon of light and hope, not only for herself but to those around her navigating similar challenges. I had the wonderful fortune of meeting Anna in person in March at the Young Survival Coalition 2019 Summit in Austin, Texas, and can attest to the fact that she is, in fact, just as sweet and genuine in person as she is over social media.

Find Anna Online:

Blog/Website: mycancerchic.com

Instagram: @mycancerchic

Facebook: @mycancerchic

Twitter: @mycancerchic

VIEW ALL EPISODES

020: Living with Chronic Illness with Chronically Courtney Pest

Courtney+Pest+-+Headshot.jpg
 

SHOW NOTES:

I’m still recovering from my SRS brain radiation. The first few days were as nothing at all had happened - I was shocked since it seemed that something that is physically damaging one’s brain, the single structure responsible for the design of one’s existence and one's personhood, would carry with it some repercussions. The following week, I noticed I was a little more tired than usual, but my mom was staying with us, so I was able to mitigate much of the fatigue with a couple of extra hours of sleep each morning.

Which brings me to today, almost 2 weeks post radiation. I woke up yesterday morning with a raging headache, and my whole body felt like a bag of sand. I was groggy and irritable, but forced myself to get up and begin moving around by about 11:30 am, after sleeping for nearly 14 hours). As the day went on, my headaches got worse and more localized. They were like flashes of light in my skull, flaring and then fading out quickly. By the evening, I began to get concerned about them and resolved to call my radiation oncologist the next morning if they hadn’t resolved. They hadn’t, and the radiation oncologist’s office recommended that I go back on a course of steroids for the next few days. They believe that it is likely localized brain tissue swelling, a common side effect of the brain radiation, and often relieved by the steroids. It’s another bump in the road, a hurdle, and a challenge to navigate this new normal on top of everything else. As I am recording this, I’m actually struggling to keep my eyes open, and once I finish, I’m going to try to lie down again - although often I struggle with insomnia due to the steroids.

This is life with an ongoing illness, whether you term it chronic, incurable, or terminal. At any given point in the day, life taps you on the shoulder and asks you to spin the wheel - you might be feeling great, then all of a sudden…you aren’t, and have to recognize those limitations or pay dearly for them. On the blog “But You Don’t Look Sick” Christina Miserandino pioneered “Spoon Theory” as a way to analogize ongoing health challenges. Wikipedia defines Spoon Theory as “a neologism used to explain the reduced amount of mental and physical energy available for activities of living and productive tasks that may result from disability or chronic illness” but for those actually living as “Spoonies” as those with ongoing health challenges often call themselves, it provides a lens for others to better understand the challenges we navigate at any given moment. Our illnesses so often exist with a cloak of invisibility, showing us what strengths that belie our weaknesses, our struggles, our limitations.

My guest today is Courtney Pest, who was diagnosed with acute lymphoblastic leukemia at age 14. She missed her entire freshman year of high school due to her cancer treatment and proceeded to go through chemotherapy for nearly three years. She currently lives in Ontario, Canada with her husband, dog, and cat. She has degrees in psychology, teaching, and certificates in early childhood education, behavioral scientist, and autism.

Ever since her leukemia diagnosis, she has struggled with at least three diagnoses at any given time including but not limited to, fibromyalgia, rheumatoid arthritis, chronic back pain stemming from herniated bulging and ruptured discs as well as degenerative disc disease.

In this episode, Courtney and I talk about the manner in which illnesses dictate so much of our lives but despite that, we find ways to define ourselves outside of the pervasiveness of our illness. Courtney also gives us a glimpse into her typical day, comparing a good day for her with a bad day.

The Spoon Theory by Christine Miserandino

Find Courtney online:

Fight Like A Warrior

Instagram - @chronically_courtney

Instagram - @FightLikeaWarrior

Twitter - @ChronicallyCori

VIEW ALL EPISODES

019: The Breakthrough: Immunotherapy and the Race to Cure Cancer with NY Times bestselling author Charles Graeber

Charles Graeber - Headshot.jpg
 

SHOW NOTES:

And we’re back - and switching gears - my guest today is CHARLES GRAEBER,  an award-winning journalist and New York Times bestselling author of The Breakthrough: Immnuotherapy and the race to cure cancer, and “The Good nurse”.  His work has been included in collections including The Best American Science Writing, The Best American Crime Reporting ,The Best American Business Writing, The Best of 10 Years of National Geographic Adventure, The Best of 20 years of WIRED, and The Best American Magazine Writing as selected by the American Society of Magazine Editors and The Columbia Journalism School, and garnered honors including an Alfred P. Sloan fellowship and an Overseas Press Club’s Ed Cunningham Award for outstanding international journalism.

Charles and I talk about a different place in the intersection of cancer and life - immunotherapy - a place of both incredible medical advancements and future unknowns, as this innovative approach has gained presence within the world of cancer research. His book, the Breakthrough, serves as an approachable yet informative manual for anyone navigating a cancer diagnosis, as a critical tool in the understanding of potential treatments outside of the traditional trio of chemo, radiation, and surgery. Charles and I discuss the scientific mechanisms of immunotherapy, as well as the setbacks and limitations of developing immunology-based cancer treatments. In addition, we discuss the limitations of clinical trials: that we need doctors to be more willing to explore trials earlier in treatment, patients need to be willing and receptive to try trials, and trial sponsors need to be more nuanced in their approach to the needs of patients in order to recruit trial participants, create the tools for treatment adherence, and expand their criteria for inclusion in trials, particularly for patients with brain metastases.

Find Charles online:

Website

Twitter 

Facebook

The Breakthrough: Immunotherapy and the Race to Cure Cancer

The Good Nurse: A True Story of Medicine, Madness, and Murder 

VIEW ALL EPISODES

018: Jessamyn Lopez

Jessamyn+Lopez+-+Headshot.jpg
 

SHOW NOTES:

A few days ago, I was sorting through the mounds of paperwork that had accumulated in my office over the last year- exp of benefits, conference glossy fliers, and pages and pages of notes from every appointment I went to. And then I found, buried at the bottom of a giant stack of folders full of paper, the notebook that I had purchased in between my mammogram and biopsy, on Nov 9, 2017. The notes from my first appointments with cancer doctors.

It struck me to look back and review those notes, just how dismissive those doctors were. I had notes about my symptoms that clearly indicated my metastatic status, and I felt transported back to that place, where I felt small, unknowing, insignificant. To the place where I didn’t feel like I had a say in my treatment or my assessments.

I was also transported, that evening, into a place where I was no longer metastatic- where I felt like I could step into that world again, if only for a few minutes, and envision my life if things had been different if my cancer had been caught earlier. It’s a fantasy for sure since we all know that it’s not the case for me. But what if I had known I was likely to be at risk for all of this? What would I have done with that information?

My guest today, Jessamyn Lopez, is one of my oldest friends- we met in after school care in elementary school, and continued to keep in touch throughout high school, college, and beyond. During all of this, Jessamyn’s father was diagnosed with breast cancer, which later metastasized and caused his death.

After her father’s diagnosis, Jessamyn sought genetic testing and tested positive for the BRCA 2 gene. Jessamyn found herself in a web of tremendously difficult decisions surrounding family planning in her very new marriage, and ultimately choosing to undergo a bilateral prophylactic mastectomy and removal of her fallopian tubes. Jessamyn and I have had innumerable conversations since my diagnosis, and it has always struck me how, when we talk, there is no “before” for either of us- every facet of our lives is now filtered through the lens of this diagnosis, even our experiences prior to cancer. When I found those notes from 18 months ago, it struck me how difficult it was to relive the moments of that understanding of the fundamental changes for every single aspect of my life. I’m not going to compare life with metastatic breast cancer to life with an genetic mutation, because that’s irrelevant for this conversation. What struck me as so connecting with my conversation - and overarching friendship with Jessamyn - is how universal that change, that shift in your life is, and how it shatters your entire worldview. There is universality in that feeling of wishing you could step back into an earlier, or different time, and live in one’s innocence, one’s unknowing, for a little bit longer.

With CRISPR, Scientists Engineered Nearly 4,000 Mutations of a Breast-Cancer Gene

Angelina Jolie's Op-ed

FORCE (Facing Our Risk of Cancer Empowered):

The Ovarian Early Detection program at Northwestern that I've been in for 9 years

Jessamyn's Instagram

VIEW ALL EPISODES

016: Love Always, Mom with Filmmaker, Tricia Russo

Tricia Russo - Headshot.jpg
 

SHOW NOTES:

After my metastatic breast cancer diagnosis, the one thing that stuck in my mind the most was “how the hell do I parent in the midst of all of this?” It felt like a struggle to even manage my own day, let alone still navigate things in a way that would allow me to properly care for my son. I just didn’t know how I was going to do it. By and large, we have found a new normal, as he gets older and I process and understand more about my life with metastatic breast cancer. But some days, I still don’t know how I’m going to do it.

Currently, I’m navigating my diagnosis of brain metastases, and the thought of that terrifies me - I have to perform some pretty intense mental gymnastics in order to keep my mind out of very dark places. Last week, when I received the news, my first impulse was to basically just spend the day in bed with my head under the covers. I didn’t really want to face the world. Then I realized that I had the opportunity to interview today’s guest, and it dawned on me: who better to have the opportunity to talk to about metastatic parenting, brain mets, and the challenges of being a mom of a young kiddo and still dealing with metastatic breast cancer? Tricia Russo’s life as a parent is an incredible testament to the tricky reality of hope when living with cancer, especially metastatic cancer.

Tricia was initially diagnosed with stage 2B breast cancer in December 2011. After a year of treatment, including chemo, single mastectomy with expander, radiation, and reconstruction, she and her husband began discussing their options to start a family. Only two months after a clean scan, Trish was re-diagnosed as metastatic when metastases were discovered in her brain. She underwent brain surgery, partial brain radiation, and then stereotactic radiosurgery through 2016. While she was dealing with this diagnosis, she and her husband considered IVF as a way to start their family but were unable to do so due to Tricia’s continued treatment. In 2015 they decided to pursue family building with a surrogate/gestational carrier. They became a family of three in November 2016, when their son, Grayson, was born.

Tricia is a filmmaker, Patient Advocate, mother, and founder of The Cyan Gray Hope Foundation, a non-profit focusing on creating content to raise awareness, and ultimately funding for research, for MBC and infertility.  Tricia has been living with MBC (mets to brain) since 2013 and has been NED for 6 years. She previously worked in film development for Walt Disney Motion Pictures but little did she know that her own life would become fodder for her storytelling.  ‘LOVE ALWAYS, MOM’ is her award-winning documentary feature about her journey to have a child through egg donation and surrogacy after her metastatic breast cancer diagnosis. It is currently screening on the film festival circuit and there will be community screenings throughout 2019 leading up to a streaming release. Tricia served as a ‘Hear My Voice Volunteer’ for Living Beyond Breast Cancer in 2017 and runs a support group for young MBC survivors in Los Angeles. She resides in Los Angeles with her husband, screenwriter Greg Russo, and their son, Grayson. She loves taking her son on adventures, whether around Los Angeles, across the country to visit family in her home- state of New Jersey, or to film festivals and cancer conferences far and wide.

Love Always, Mom is currently on an east coast tour, with screenings in Hagerstown, MD, Millburn, NJ, Philadelphia, Brooklyn, NY, and then back to the west coast for Los Angeles, CA, Redwood City, CA screenings. You can purchase tickets or make donations through Brown Paper Tickets or through the website www.cyangray.org. As a special promotion for the Brooklyn screening for Love Always, Mom, we are giving away two tickets - stay tuned for more details at the end of the show.

Here's where to find Tricia online:

Blog/Website

Instagram - @russotricia

Instagram - @lovealwaysmomthemovie

Facebook - trish.gonnellarusso

Facebook - lovealwaysmomthemovie

Facebook - CyanGrayHope

Twitter - @LAMthemovie

VIEW ALL EPISODES

015: Living in the Now with Christine Buttegieg

Christine Buttegieg - Headshot (1).jpg
 

SHOW NOTES:

In the final lines of his poem, Ulysses, Alfred, Lord Tennyson writes:

 

Tho' much is taken, much abides; and tho'

We are not now that strength which in old days

Moved earth and heaven, that which we are, we are;

One equal temper of heroic hearts,

Made weak by time and fate, but strong in will

To strive, to seek, to find, and not to yield.

 

What do we talk about when we talk about resilience?

What is it that makes something resilient?

Resilience isn’t necessarily the inflexibility to withstand impossible forces or obstacles, but the strength in yielding, the suppleness to respond, to bend with the forces that come at us.

Resilience isn’t hope, and it isn’t fear, but it’s a recognition of both of those things in which neither overtakes the other. It’s a nest, woven with threads of both anticipation and expectation, with the full recognition that it may be blown from the tree where it sits, but at the same time, it presently is still secure in its current - much safer - location.

I received some pretty tough news last night - at the time I’m recording this, it’s still incredibly fresh, and difficult to wrap my head around. A few weeks ago, when I last saw my oncologist, I mentioned some unusual headaches I had been having. They weren’t terribly bad, but were not easily explained, and were, well, just strange. She ordered a brain MRI to follow up with them. You know where this is going.

My oncologist called late last night - after 9 pm. I almost always know when she’s calling because her number shows up as “No Caller ID” on my phone, the only number that does, and if anyone else from my cancer center calls me, the main line shows up on the screen. Before I even picked up the phone, I knew. My stomach coiled into a weighty ball, and I braced myself for the news I was terrified to hear.

I have metastases in my brain.

Now currently, I really don’t want to be talking about this. I don’t want to be even thinking about it. But, unfortunately, I don’t have a choice - it’s my life now. For those of you who are finding out about this for the first time through this podcast, I apologize. This news is less than 24 hours old, and honestly, we just don’t have a lot of information right now, and I can’t answer the same questions over and over.

And that is where this place of resilience comes in. Resilience, in many forms, recognizes the space that we need to create for ourselves and says “to hell with everyone else, I am claiming this for myself.” It recognizes and honors the shitty things that can, and do happen, and gives us the roots to bend, but not break.

When I first got diagnosed with breast cancer, then metastatic breast cancer, then when I had progression in December, then basically all of 2019, culminating with the phone call last night with my oncologist, I found myself sobbing that I was so afraid - that I didn’t want to die. When I finally secured enough Ativan to get me to sleep (disclaimer, it did not exceed the prescribed therapeutic dose) I took a hot shower. As I stood in the water, and the bathroom filled with steam, I choked on sobs, finding myself closer and closer to the most terrifying fear that I have ever felt.

And then it dawned on me. I felt so close to death and felt that fear so viscerally because it was so real, so concrete. We all know we are going to die. But we don’t know how, or when, we’re going get there. We don’t know what the in-between spaces look like, or how they will play out. I was trying to push against the inevitable. I eventually will die, and by immediately letting my mind exist in that place fails to recognize that I am currently not dying. Yes, I have a very serious disease. But that willingness to recognize the strength in yielding to what comes in the interim, to see it, to acknowledge it and give it no more and no less time and energy than it needs, that gave me power. It’s giving me power right now. I’m not in the process of dying, I’m recording this podcast. I’m going to pick my son up from school, and we’re probably going to read some books together. I can exist in the unknown space, fully aware that I don’t know what is to come.

Made weak by time and fate, but strong in will. To strive, to seek, to find, and not to yield.

My guest today is Christine Buttegieg, an incredible example of resilience through almost every facet of her life. Christine is a working mom of two who was diagnosed with appendix cancer at age 34 in February of 2015, less than a year after her second child was born. Throughout her diagnosis and treatment, Christine’s journalism background provided her the tools to research, ask questions, and more fully understand what she and her family were going through. She is also a 4 time Emmy and 4 time Murrow award winner.

Appendix cancer is incredibly rare, affecting 0.03% of people.

Christine originally thought she was being treated for routine appendicitis, but after seeking out a second opinion at Memorial Sloan Kettering, her oncologist discovered additional tumor sites on her abdominal lining, making her stage IV. Christine went through some seriously intense chemo regimens, including a nonstop chemo fanny-pack with a pump, and both EPIC and HIPEC chemo, which are intra-abdominal chemotherapy that is super-heated, and then you soak in it for almost two hours before it’s drained. After a recurrence in 2016, Christine is currently in remission.

Christine's Facebook

MSK Patient Feature - Christine’s Story

MSK Patient Feature - When Appendix Cancer Returns

VIEW ALL EPISODES

014: Do You Believe in Miracles with Nicole Body

Nicole+Body+-+Headshot.jpg
 

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.

-----

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

VIEW ALL EPISODES

013: Stage IV Needs More with METUP President Susan Rahn

Susan+Rahn+-+Headshot.jpg
 

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

VIEW ALL EPISODES

Season Two Teaser!

itunes 1600x1600 intersection.jpg
 

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!

VIEW ALL EPISODES