Today, October 13th, 2019, is Metastatic Breast Cancer Awareness Day.

In honor of this day, and to remember that 116 people die every day of this disease, I will be reading a list of 116 names. Each person mentioned died of metastatic breast cancer, and so, so many more.

1. Noelle Gray
2. Monica Hill
3. Patricia Wu
4. Teva Harrison
5. Rebecca Scheinkman
6. Lindsay Ruland
7. Andrea Parker
8. Christine Knowles
9. Josh Hendrix 
10. Jennifer Friar Groves
11. Suzanne Dahlgren
12. Judy Erdahl
13. Amanda DeFiebe
14. Margaux Untracht
15. Hannah Thomson
16. Caitlin Masterson
17. Jessica Karabian
18. Sheryl Nichols
19. Michael Selsman
20. Wanda Lewis
21. Katie Sanders
22. Shannon Weber Lewis
23. Ben Truitt
24. Priscilla Grant-Battle
25. Ann Donovan
26. Linda Manthei
27. Gerard Campion
28. Cara Gentile
29. Debbie Petrocelli
30. Stacey Smith
31. Jose Luis Gonzales
32. Jenny Pagliaro
33. Tanya Sumner
34. Stephanie Sunday
35. Briana Sykes
36. Maggie Van Duyn
37. Anya Silver
38. Champagne Joy
39. April Hines
40. Susan Rosen
41. Rob Fincher
42. Annie Fuller
43. Heather Sabella
44. Larissa Podermanski
45. Uzma Yunus
46. Andrea Zinn
47. Beth Caldwell
48. Nina Riggs
49. Allison Elrod
50. Mandi Hudson
51. Melissa Tang
52. Rebecca Szpara
53. Laura Williams
54. Adrienne Toth
55. Lisa Brown
56. Terrie McGray
57. Kim Varga
58. Regina Cooley
59. Marcia Mays
60. Jennifer Hendryx
61. Erin Grant
62. Adrienne Dorris
63. Valerie Wright
64. Mike Phillips
65. Donna Peterson
66. Joyce Heckman
67. Ashley Gollahon
68. Rachael McKillip
69. Nicole Marchand
70. Emma Spangler
71. Delores Ochs
72. Maybe Brunner
73. Key Peters
74. Amber Gillespie
75. Laura Lennox
76. Pat Woolridge
77. Christina Newman
78. Jody Schoger
79. Sarita Jordan
80. Linda Forster
81. Erin Grant
82. Lori Stillwell
83. Melinda Connelly
84. Michelle Middleton
85. Kristi Kramer
86. Sarah Amento
87. Sylvia Walker
88. Bobbie Jo Bolinger
89. Mary Ann Baker
90. Emma Shaw
91. John Lunardo
92. Barbara Kelly
93. Roxanne Gibson
94. Mary Frances
95. Nina Frances
96. Lynna Spornick
97. Angela Powell
98. Kerry-Anne Turner
99. Cheri Rauth
100. Bill Becker
101. Tatum Bowerman-Hummel
102. Blanca Villalba-Baldonado
103. Sheryl Nichols
104. Ken Williams
105. Roland Taylor
106. Linda Cramer
107. Lindsay Kavka
108. Kay Hukill
109. Rebecca Barrett
110. Melanie Curran
111. Kerri Chalmers
112. Tracy Jo Blata
113. Leanne Murtha
114. Faylayn Liber
115. Alan Blood
116. Yenifer Euceda

Metastatic

by Anya Silver

I’d like a long braid to lasso my rage away,
to stand on a stage in a garter belt
and thigh high boots and stamp my feet
through the floor, like to put my face
right up against someone else’s face and scream
until the scream knocks me to my knees, coughing.
I could become an arsonist, delicious click of the lighter.
Every time someone I love dies, I’d like a diamond
to line the hilt of a dagger, or tip an arrow.

I’d like to shoot the whole God damned universe
through its infinite starry center, and watch it suck
into itself, scattering the suns and galaxies
over each other like a jar of tipped glitter.
Don’t tell me not to be angry.
Do you know how close I am to flinging my whole body
at you, how little I care about being hit
back or spat on, or bruised? Humiliation
means nothing to me. I have nothing to lose—
If you push me off a building, I’ll sing.
I’d jump in front of a bullet if I could.
I’d let someone wring my neck if only
I knew it would hurt God just one bit to watch me die.

 One of the most difficult, most heart-wrenching things about life with metastatic breast cancer is how many people just like you you watch and listen to die. Every day, it’s happening, and I can’t go on social media sometimes because I’m afraid of what news I’m going to get. I’m afraid of who I’m going to lose next. Metastatic cancer, when it gains momentum, has a tendency to move very quickly. It’s terrifying, and it’s also our reality. The longer I live with this illness, and the more time I spend with the metastatic community, the more incredible, amazing people I meet. And the more incredible, amazing people I watch die.

 It feels cruel and unfair, like a sick cyclical groundhog day, where we  - or at least I - often feel torn between allowing my grief to pull me under and submerse me, knowing that it will hit me unyieldingly in incessant waves. Knowing that that grief is not survivable, either, and that, submerged in it, I have no air for anything else. Or I can tamp down that grief, let go of it while I cling to a life raft- literally, to life, to the numbness that comes with continuing on after loss. For me, it often feels like an either/or sort of thing, and yet, to choose one feels like a betrayal to the other.

 However, there is another kind of grief that I’ve found myself experiencing more and more as I continue to live this life with cancer. It’s an unexpected grief, something I couldn’t put my finger on until recently. Something that, to me, feels like this very fundamental cornerstone of loss. I find myself, over and over, grieving for the people that I never met, never interacted with, and never will.  The people I learn about only through their obituaries, their online tributes, the condolences that float through our shared Facebook groups. These people, whose lives are punctuated by the illness that stole them, who will never post another late-night worry or pose a question to the online community, or who will never let us know the results of a good or bad scan. Whose lives, and everything that they encompassed, are over.

 I have experienced this grief so many times over the last two years, but, in many ways, one person has stuck out to me- the incredible, indomitable poet Anya Silver, who died last year from metastatic inflammatory breast cancer. We shared membership in a number of Facebook groups and online metastatic breast cancer communities, but had never interacted, but for a few comments on the same threads. I didn’t know much her until I read her obituary, posted in one such group. A few months later, her husband posted on Facebook that he was looking for interview subjects to be part of his documentary theatre project about metastatic breast cancer. I reached out, interviewed, and today- October 10th, the day this episode is airing- a cast of all metastatic people will be performing a reading of the first act of the play in Washington DC.

 Through my involvement with this play, I’ve gotten to know so much more about Anya, and the more I learn about her, talk about her, read her poetry, the more angry I am that she is gone, and the more I feel that immense, weighty sadness that I will never get to meet her or get to talk to her. That my voice continues a conversation that is fully one-sided, conversations I wish so much I could have had with Anya.

 In today’s episode, I talk with Anya’s husband, Andrew Silver. Over the last few months, Andy has become a dear, dear friend to me, and I am fortunate to have the opportunity to help out with his play. It’s an incredible project, and one that I am so proud to have had a part in. But more than that, it carries on these one-sided conversations, the conversations between the living and the dead, and breathes a bit of life back into those who we have lost. And, in doing so, makes the impact of those losses so much harder, so much more real. Andy’s play, IV, is a documentary theatre project that uses the voices from those who have lived with metastatic breast cancer, as well as family members, friends, and loved ones, to amplify the need to understand the nuances of individual lives in order to capture the collective experiences of those living with this disease.

 Andy has lived out these such experiences for his entire life. His mother died from metastatic breast cancer in 1985, when he was 14 years old. His wife, Anya, was diagnosed with inflammatory breast cancer when she was pregnant with their son. Her disease later metastasized, and she died from metastatic inflammatory breast cancer in 2018. This play serves as a gathering point for his experiences, and for hundreds of others - those who have come before, and those that will come after. In our conversation today, we talk about his life with breast cancer, as well as those of his wife and his mother. We talk about parenting with cancer, grief, and how the play is unfolding. Andy is a professor of English at Mercer University, and also a playwright, songwriter, and musician. He lives in Macon, Georgia, with his teenage son and their dog.

I often say that having breast cancer introduces you to the worst club with the best people. It seems so strange, but it’s so true. In particular, it seems like the worse things get - at least for me - the better the people are. When I was first diagnosed, I found an incredible community willing to circle the wagons around me. That community grew tighter and more generous with their time, resources, and support after I was diagnosed metastatic. Even mores when I discovered I had brain mets. It’s truly amazing, and I could not be here, doing what I do, without the unflinching support of this group of people.

Two of the people who have been critical pieces of that support system are my guests today. Julia Maues and Christine Hodgdon are both women in their 30s living with metastatic breast cancer. They’re incredible researchers, advocates, and brilliant educators for those both in and outside of the metastatic breast cancer community. Julia was diagnosed with HER2-positive breast cancer while pregnant at age 29. After her son was born, she found out the cancer was metastatic and had spread to her brain, liver and bones. She has been in active treatment since 2013.

For the first few years after her metastatic diagnosis Julia did not get involved in support groups or advocacy. When her oncologist asked her to speak at a fundraiser for his research she realized the power of sharing her story. Being able to help other patients going through similar struggles and to help researchers better work for patients have been extremely rewarding. As she has gotten more involved with breast cancer advocacy she has become more aware and outspoken about the struggles that the metastatic breast cancer community, in particular, faces.

Julia is a member of multiple advocacy groups that work with researchers, clinicians and other stakeholders to ensure that research is patient-centered, innovative and accessible. She is a graduate of Living Beyond Breast Cancer Hear My Voice program and the Alamo Breast Cancer Program. Julia has spoken at the San Antonio Breast Cancer Symposium, the YSC Summit, the DC Komen MBC Conference. Behind the scenes, Julia has served on American Society of Clinical Oncology (ASCO) guideline panels, as a reviewer for the Department of Defense Breast Cancer Research Program and is an active member of local support groups in D.C. and closed Facebook groups for people with metastatic breast cancer.

Christine has been a breast cancer advocate since her metastatic breast cancer (MBC) diagnosis in April 2015. Her goal as an advocate is to represent the collective voice of young MBC survivors. As a patient who falls into both the young and metastatic cohorts, she feel uniquely qualified to bridge the gap between doctors and patients. she aims to work with scientists to identify and address the disparities that exist in patient care, especially in underserved and vulnerable populations that are disproportionately impacted by breast cancer. she has even launched her own website TheStormRiders.org as an education tool for the breast cancer community. The mission of the Storm Riders Network is to 1) provide the most up-to-date scientifically accurate information about breast cancer and its treatments, and 2) to distill this information into a digestible format that is easy to understand. The website now includes a database of MBC-specific clinical trials and promising drugs.

Today, these two incredible women talk about their individual advocacy works, as well as their collaborative efforts, and the critical importance of friendship within the metastatic community. 

Christine's Website: The Storm Riders

Christine's Twitter

Julia's Website: It's Not Pink

Julia's Twitter

———

Thank you so much for listening to the Intersection of Cancer and Life. For show notes and more about each episode, you can go to my website, emilyrgarnett.com/podcast. I’m also on instagram @beyondthepinkribbon, twitter @emrgarnett, and facebook @beyondthepinkribbonblog. If you have questions, comments, or just want to say hi, you can email me at [email protected]. 

The Intersection of Cancer and Life receives audio production support from Podigy.co. 

And we’re back! As this episode is being released, it’s October 1st, which means that breast cancer awareness month is upon us. Fittingly, I also have scans this morning, after what has been pretty much a year of hell. Let’s backtrack: My last stable PET scan was in September 2018, right after my hysterectomy. In December, I experienced progression in my bone lesions, and in January, I started a clinical trial. After being diagnosed with brain lesions in March and undergoing stereotactic radiosurgery in April, my disease progressed into my liver and lung in April, removing me from the clinical trial. I then started Xeloda, and oral chemotherapy drug, that month. Two months into my treatment with Xeloda, my tumor markers, liver enzymes, and liver pain skyrocketed, sending me for scans nearly a month ahead of schedule. My largest liver lesion had doubled in size, and I had developed several new lesions as well. It was time to bring in the big guns. The following week, in July of 2019, I started my first course of IV chemotherapy: Taxol. 

To say that Taxol has been a bitch would be an understatement. It’s been brutal. After about two weeks, I lost all of my hair - and when I say all of my hair, I mean ALL of it. It’s slowly growing back now, but, as my husband said a few days ago, “you look like a baby goose who flew into an electrical wire.” So, not exactly winning any style awards these days. And then there are the rest of the side effects: GI issues, near-constant nausea, body aches, and pain. A lot of pain. Enough pain to warrant three emergency room visits in the last month. So fingers crossed that I can have my first stable scan in over a year. 

But let’s chat a little bit about breast cancer awareness. What exactly does breast cancer awareness mean? What are we working for when we are trying to foster “awareness” of the disease? I honestly would love to hear what other people think about this. Personally, I think that the term awareness has lost effect. We need to break down what our campaigns are doing and make sure that they are falling into what I think of as the three subcategories of awareness: education, advocacy, and community-building. If it’s not doing one of those three things, than that awareness activity is feeding into the culture of pink-washing, which is when a brand slaps a pink ribbon on something without further explanation, and relies on that pink ribbon to boost sales, often without a direct connection to an organization or specific mission, other than “awareness.” And that really just allows people, and companies, to buy into the commodification of breast cancer. Because I can’t imagine how many companies’ sales would be boosted if they slapped a sticker on their product and said “116 PEOPLE DIE EVERY DAY from metastatic breast cancer” - and yet, that’s the reality of breast cancer. We don’t need breast cancer awareness, we need metastatic breast cancer awareness: we need advocacy, education, and community building.

So for this month, October, I am going to be doing my best to do those three things. I will be talking with guests whose lives in the breast cancer world have shifted past awareness into a space that works toward those three tenets in order to further work toward true understanding of life with breast cancer. My guest today, Laura Carfang, is as much of my guest as I am hers - we conducted a joint interview of each other, and came out with a fantastic conversation about community that I hope resonates with many who are listening. 

 Laura Carfang, the host of Breast Cancer Conversations podcast, is SurvivingBreastCancer.org's Executive Director.  She is a firm believer that everyone's voice should be heard. She's an advocate, mentor, leader, and visionary with over 10+ years working in education, development and programming in the non-profit sector. Laura was diagnosed with breast cancer at age 34, and subsequently founded SurvivingBreastCancer.org to empower breast cancer survivors and their caregivers from day one and beyond. SurvivingBreastCancer.org provides resources and a platform for navigating a breast cancer diagnosis. 

Show notes: emilyrgarnett.com/podcast

Instagram: @beyondthepinkribbon

Twitter: @emrgarnett

Facebook: @beyondthepinkribbonblog

Email: [email protected]

Thank you so much for listening to the Intersection of Cancer and Life. If you like the show, you can hit subscribe and leave a review. Thanks for stopping by - I'll see you next time on the Intersection of Cancer and Life.

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

---------
“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 

------ 

Follow Emily to get the latest updates on the show!

Blog: emilyrgarnett.com

Instagram: @beyondthepinkribbon

Facebook: @beyondthepinkribbonblog

Twitter: @emrgarnett

Website: theintersectionofcancerandlife.com

Mouth Off Network: mouthoffnetwork.com

Email: [email protected]

This week, we are doing something a little different and 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!

-----

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?

------ 

Follow Emily to get the latest updates on the show!

Blog: emilyrgarnett.com

Instagram: @beyondthepinkribbon

Facebook: @beyondthepinkribbonblog

Twitter: @emrgarnett

Website: theintersectionofcancerandlife.com

Mouth Off Network: mouthoffnetwork.com

Email: [email protected]

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,” 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

------ 

Follow Emily to get the latest updates on the show!

Blog: emilyrgarnett.com

Instagram: @beyondthepinkribbon

Facebook: @beyondthepinkribbonblog

Twitter: @emrgarnett

Website: theintersectionofcancerandlife.com

Mouth Off Network: mouthoffnetwork.com

Email: [email protected]

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

------ 

Follow Emily to get the latest updates on the show!

Blog: emilyrgarnett.com

Instagram: @beyondthepinkribbon

Facebook: @beyondthepinkribbonblog

Twitter: @emrgarnett

Website: theintersectionofcancerandlife.com

Mouth Off Network: mouthoffnetwork.com

Email: [email protected]

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

------ 

Follow Emily to get the latest updates on the show!

Blog: emilyrgarnett.com

Instagram: @beyondthepinkribbon

Facebook: @beyondthepinkribbonblog

Twitter: @emrgarnett

Website: theintersectionofcancerandlife.com

Mouth Off Network: mouthoffnetwork.com

Email: [email protected]

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 

------ 

Follow Emily to get the latest updates on the show!

Blog: emilyrgarnett.com

Instagram: @beyondthepinkribbon

Facebook: @beyondthepinkribbonblog

Twitter: @emrgarnett

Website: theintersectionofcancerandlife.com

Mouth Off Network: mouthoffnetwork.com

Email: [email protected]