024: What Happens When You Get a Group of Cancer Podcasters Together?

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SHOW NOTES:

For the Season 2 finale, we wanted to switch the conversation up a little bit, so I’m welcoming six other breast cancer podcasters onto the show for a round table conversation. It’s not often that you get a group together like this, a half-dozen total strangers, bonded only by our need to talk about our illness in this way, but I can’t even fully capture what an amazing group this is. We had so much fun, and I hope you enjoy listening as much as we enjoyed recording.

The show will be taking a brief break over the summer, and be back in a couple of months with a deep dive into breast cancer. We’ll be talking to researchers, doctors, advocates, and unpacking the challenges of all aspects of life with breast cancer in anticipation of October’s breast cancer awareness month. I’ve been so honored to continue to share these conversations with you, and am so excited to keep going. Have a wonderful summer!

Guests:

Kelsey Bucci

Kelsey Smith

Tina Conrad

Leanna House

Mimi Hall

Lindsay DeLong

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“But You Don’t Look Sick” Podcast:

Kelsey Bucci is 32 years old, a military wife and mother of 4 kids, ages 9, 7, 6 and 4, and the owner of the clean beauty store Paris Laundry. She is also a stylist, podcast, and breast cancer advocate. She lives in Savannah, GA with her family and is about a year out of active treatment. She was diagnosed with stage 2 breast cancer at the age of 30.

Blog/Website: http://theblogpardonmyfrench.com

Shop: https://parislaundry.com

Instagram: @kelseybucci

Facebook: @kelsey.bucci.3

Podcast: But You Don’t Look Sick

 

“The CanSurvivor” Podcast:

Kelsey Smith was diagnosed with stage two breast cancer at the age of 29 in 2014. Without hesitation, Kelsey underwent the most aggressive treatment she could: A double mastectomy with reconstruction, 20 weeks of chemotherapy, and five years of maintenance medication. Currently, in remission, Kelsey hosts a weekly podcast entitled “The CanSurvivor Network” which highlights various breast cancer-related initiatives. Kelsey has worked with the University of Michigan, The American Cancer Society, and local charities as a support group facilitator. She resides in Temperance, Michigan.

Blog/Website: www.thecansurvivor.org

Fundraising Page: https://www.bonfire.com/the-cansurvivor-network/

Instagram:  @thecansurvivor

Facebook: @TheCanSurvivors

Twitter: @TheCanSurvivor

Podcast: The Cansurvivor Podcast with Kelsey Smith

 

“DJ Breastcancer” Podcast:

Tina Conrad was diagnosed at age 37 with stage III estrogen-positive breast cancer in 2013. She is a year breast cancer survivor, and her mother is a 2-time triple-negative breast cancer survivor. They have had different kinds of cancer and nothing from a genetic testing perspective to indicate why they both developed cancer at a young age.  At the time of her diagnosis, Tina was newly married and had a new promotion. With her diagnosis, a lot of things changed... friendships grew, others faded, her career aspirations changed...She does feel that her relationship with her husband grew stronger, however, there are times when he doesn't understand her as her pink sisters do. She has built a support system of many strong women, including my mom, and fights every day to advocate for research dollars because she does not want her goddaughters to live in a world with a breast cancer diagnosis, and volunteers with the Vera Bradley Foundation for Breast Cancer Research.  Tina believes that research is the answer for breast cancer- we need to do more!

Blog/Website: www.djbreastcancer.org

Instagram: @djbreastcancer

Facebook: @Tina Conrad @DJ Breast Cancer

Twitter: @djbreastcancer

Podcast: DJ Breast Cancer

 

“Thanks, Cancer” Podcast:

Hosts Leanna House and Mimi Hall met at a support group at Dana-Farber Cancer Center, and through their friendship, the podcast, Thanks, Cancer, developed. Leanna House lives in Boston and works in grants/finance in medical research. Leanna was diagnosed at 33 with same cancer that killed her mother: estrogen positive her2 negative breast cancer. She had chemo (A/C and taxol), a unilateral mastectomy with full auxiliary node dissection, radiation, and reconstruction. She is now on hormone treatment for the foreseeable future. Leanna co-founded a Thanks, Cancer! podcast, and is involved in the Patient Family Advisory Council at Dana-Farber Cancer Institute.

Mimi Hall is a community development manager, food consultant and yoga instructor who originally hails from Cape Cod and lives in South Boston. She was diagnosed with aggressive triple-positive breast cancer in 2015 and received treatment at Dana-Farber through 2017, which included a trial study of the targeted immunotherapy drug T-DM1, a bilateral mastectomy with immediate reconstruction, 12 weeks of Taxol chemotherapy and a year of Herceptin. Podcasts helped her survive the odd combination of terror and monotony that defined her treatment experience, along with amazing friends like Leanna who understand the darkness.  That's what Thanks Cancer is all about...like getting a chemo treatment with your best friends!

Blog/Website:  https://www.thankscancer.com/

Instagram: @thankscancer

Facebook: @thankscancer

Twitter: @thankscancer

Podcast: Thanks, Cancer

 

“Cancer, Casually” Podcast:

Lindsay DeLong is the Managing Editor of the Fullest Magazine. She was diagnosed with She found a lump in her own breast at age 33, and was diagnosed with Invasive Ductal Carcinoma, ER+, PR+, and HER2+ breast cancer on October 11, 2016.

Blog/Website: Cancer, Casually on the Fullest

Instagram: @cancercasually

Podcast: Cancer, Casually 

 

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023: Q&A With Emily Garnett

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SHOW NOTES:

This week, we are doing something a little different and I am answering some of your questions! If you have something you'd like to ask, please send it over and I will answer it in a future episode!

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This week's questions:

Q: How were you diagnosed?

Q: How often do you see your doctor? What doctors do you see?

Q: What is your treatment regimen? How long will you be on it? Is it working? What are the side effects?

Q: Why aren’t you doing chemo or surgery?

Q: Is it still considered breast cancer if the cancer is in your bones, liver, lung, and brain now?

Q: How does your doctor know when the cancer has spread?

Q: What is your prognosis?

Q: How do you handle your mental health with this diagnosis?

Q: How much do you tell Felix about your illness, appointments, etc?

Q: What has been the hardest part for you? What has surprised you? How do you deal with the hard parts of the diagnosis and treatment?

Q: How is your life different since your diagnosis? Have any parts changed for the better, or stayed the same?

Q: Has your cancer been hard on your marriage?

Q: What can I say or do for a friend with cancer?

 

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022: So That Happened with CC Webster Marrone

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SHOW NOTES:

This season, we’ve talked about the pivotal moments of life with cancer, and the ripple effects they have in our lives. We find ourselves unwitting participants in a trial by fire, and emerge from the acute situations forced upon us with bewilderment at the drastically different lives we find ourselves in. That just about sums up my last six weeks. After discovering my brain mets and undergoing stereotactic brain radiation, I had a follow up with my oncologist the first week of May, in which she ordered a surprise abdominal CT Scan. Which showed, you guessed it, more progression, with four new liver lesions, and a brand spanking new cancer spot in my left lung. Honestly, it’s not great. It’s pretty terrifying, actually. I’ve been having some tough conversations with myself, and with my family members and close friends, and have been really reckoning with the understanding that I might really only have a few years left if we’re being pretty optimistic. What do you do with that information?

Well, honestly, coming from that situation personally, you just put your head down and figure out your priorities and power through. Last Friday, my oncologist ordered a liver biopsy so we could get some more information about what might be fueling my disease, as it seems fairly resistant to hormone therapy now. I’m off the clinical trial, and this week started an oral chemotherapy drug called Xeloda. The first week has been surprisingly ok, but I do know it will keep hitting me harder as the drug builds up in my system, and one of the toughest side effects is that your hands and feet will start to peel and the skin will slough off - it’s called hand and foot syndrome. If you were jealous of my glamorous cancer life before, well, you’re going to be raging with envy over this one. On the plus side, I won’t lose my hair. So small wins. I will hopefully continue this drug for a long time but will be on it until it stops working. So I guess I’d rather have no fingerprints or skin on the bottoms of my feet than be a walking ball of tumors?

If I sound a little sarcastic right now, it’s because I’m processing a lot. It’s just been so much shit getting thrown at us, over and over and over. And honestly, it’s been so difficult to just get through the days, when there seems like there’s so much to do - so much I want to do, and so many different directions I feel pulled. How do you fit an entire lifetime into the prognosis of “months to years?”

Today's guest, CC Webster Marrone, found herself in one such pivotal life situation when she was diagnosed with Hodgkins Lymphoma. One minute she was working balls to the wall corporate marketing job, and the next, she was undergoing chemotherapy, pulled from the breakneck pace of her previous life to a near standstill. CC captured this experience in her book “So That Happened:,” a memoir of her life after her cancer diagnosis.

CC is a young adult lymphoma survivor and author of So That Happened, A Memoir. After her diagnosis of Hodgkins Lymphoma in 2016, at age 29,  and completing six months of intensive chemotherapy, CC learned how to redesign her personal and professional life to accommodate a new, unexpected set of priorities. As the founder and creative director of Webster Works, CC is a branding and marketing consultant specializing in working with health and wellness brands and businesses. She is based in New York City. 

Find CC online:

So, That Happened: A Memoir

Instagram

Facebook Profile

Facebook Biz Page

LinkedIn

Webster Works

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

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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

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020: Living with Chronic Illness with Chronically Courtney Pest

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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

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

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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 

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018: Jessamyn Lopez

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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

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016: Love Always, Mom with Filmmaker, Tricia Russo

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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

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015: Living in the Now with Christine Buttigieg

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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 Buttigieg, 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

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