Welcome to Black Cancer, a podcast about the nuances of our lives as people of color told through our cancer journeys. I'm your host, Jodi-Ann Burey. Our guest on today’s episode is Kandis Draw, a cancer advocate, pianist and writer.

I think many, not all, but many adult children know they’ll have to take care of their parents at some point in their lives. At some point your parents will get sick. At some point your parents will need help. At some point, we - the adult children, enter into what they call the “sandwich generation” - middle aged adults who are simultaneously taking care of aging parents and their own children.

But we all don’t get sandwiched in that way. Sometimes this thing that might happen to our parents at some point in the future, is happening now.

A few years ago, Kandis Draw, when she was just 30 years old, found herself in between jobs with a full-time job of taking care of her mother, who received an unexpected diagnosis of Stage 4 Ovarian Cancer, and taking care her younger siblings. Like many caregivers, it’s easy to lose yourself in the shuffle. In this episode, we talk about the work - THE WORK of caregiving and how Kandis turned that work into a mission - serving now as a national advocate for the Ovarian Cancer Research Alliance. We also discuss genetic testing, support groups for caregivers and much more.

Here’s my conversation with Kandis.

Our guest on today’s episode is Lauren Tarpley. At the time of this recording, Lauren was about a third of the way through her chemotherapy treatment. For the breasties out there, Lauren is BRCA-, HER2+ and hormone receport negative. She’s a wife with a toddler and because of her cancer diagnosis, she also has “three little boys in the freezer” - her description not mine. Lauren and I talk about her diagnosis path and what it means (for both of us) to be in a statistically unlikely situation. You’ll hear us talk a lot about AYA cancers - an acronym for adolescent and young adult, which is a cancer experience Lauren elevates on her platform. We also talk about decision-making for her family planning - specifically navigating this as a young adult.

Just a heads up - we have a mic switch just a few minutes in. We are trying to make this podcast during a pandemic, so thanks so much for understanding!

Here’s my conversation with Lauren.

Find more about Lauren on Instagram:

• https://www.instagram.com/typeaguidetocancer/
• https://www.instagram.com/lifewithlittleones.podcast/

Our guest on today’s episode is Tamika Felder. Tamika is a successful nonprofit founder, a cancer advocate, an award-winning director, an inspiration leader, and so much more. Her organization is called Cervivor and it’s a movement to end cervical cancer. You can learn more at cervivor.org.

Tamika was diagnosed with cervical cancer over 20 years ago - and has been unstoppable building her dreams. Her courage, wisdom, and spark are absolutely contagious. The author of "Seriously, What Are You Waiting For? 13 Actions To Ignite Your Life & Achieve The Ultimate Comeback," Tamika empowers everyday people to bounce back by equipping them with tools to find perspective after tragedy and loss. You will absolutely want to take notes and set aside some time for reflection after this. I am still beaming with everything she shared!

It's Black Cancer's first bonus episode! ⁠ ⁠ I wanted to highlight a specific conversation Kelvin had about our shared neuropathy. #Neuropathy refers to damage or dysfunction of the peripheral nerves. It can be hard to describe and the experience can be incredibly isolating and when you describe it to other people, it can be really really difficult for others to understand. When Kelvin and I first met, our neuropathy is a HUGE part of how we bonded. Finally! Someone who understands!⁠

Our guest on today’s episode is Kelvin Yates, who uses his experiences living with multiple myeloma to advocate for change in his community. He’s a father, husband, son, hobby woodworker, and a survivor — and surviving in ways that continues to make a big impact on me.

Of all the people I’ve met through this podcast, Kelvin was the first person who also heard the word “PARALYSIS” when he found out about his condition and faces the ongoing neuropathy. And for those who face neuropathy or loves someone with neuropathy, I have somethihng special for you. So much so that for the first time in Black Cancer history, I’m putting out a featurette later this week, where Kelvin and I just talk about neuropathy. So stay tuned for that!

On this episode, Kelvin shares more about his diagnosis path and how he found inspiration in his own story to grow in his advocacy. Today is our second and final episode this season that highlights multiple myeloma. Thank you to the Leukemia & Lymphomas Society for making these past two episodes possible and for all the work you do to support individuals and families navigating multiple myeloma. You can learn more at lls.org/myeloma-link.

Our guest on today’s episode is Kimberly Young, who led the team of her siblings and family members to support her mother’s journey with multiple myeloma. We talk about her mother’s diagnosis journey and faith works in tandem with the process. What most moved me about Kim’s story is the love and closeness of her family, which only amplified as they navigated a time of crisis.

Kim works for one of the biggest health insurance companies in the United States, so she shares her perspective on navigating the health insurance process and finding organizations offering financial resources and social support that insurance can’t fully cover. To honor her mother’s legacy, Kim continues to work as a cancer advocate in faith-based organizations.

This will be the first of two episodes this season focused on multiple myeloma. Thank you to the Leukemia and Lymphoma Society for your sponsorship and support of this special series.

More about LLS + Multiple Myeloma:

• Leukemia & Lymphoma Society website: https://www.lls.org/
  
• Myeloma Link: https://www.lls.org/myeloma-link
  

Black Americans have twice the incidence of myeloma as white Americans. What’s more, recent studies show that Black Americans are significantly less likely to receive the latest treatments, and are more likely to experience treatment delays. As a champion for myeloma patients, caregivers, survivors, and families, The Leukemia & Lymphoma Society (LLS) is determined to change this. We believe every patient deserves to receive the best care and support possible while we work tirelessly toward cures.

LLS is dedicated to helping Black Americans with myeloma access the treatment and care they need to survive and thrive and improving quality of life. We provide trusted, free tools and resources to help patients and caregivers navigate the treatment landscape more effectively and cope with the disease.

Listen to more stories on caregiving on the Black Cancer podcast:

• Season 2, Episode 1: The Greatest Ode to Her Sacrifice (with Janice Omadeke) : https://open.spotify.com/episode/377su9gQwDiDbJAbFAjskI?si=9a8291dfec3b45ca
• Season 1, Episode 6: She Wasn’t By Herself (with Erin Douglas): https://open.spotify.com/episode/0CuEtlFs5VX1Pf7kFwBjZL?si=fe82897ec0af4d21
• Season 1, Episode 7: The Malignancy of Both (Frantz Berthaud): https://open.spotify.com/episode/08yMuEXQdpYU5HzzSn18bW?si=cc6e96e58cf64c95

Our guest on today’s episode is Darcie Green, who brings multiple identities to our conversation today. She’s the daughter of a survivor, care giver, advocate, activist and the Executive Director of Latinas Contra Cancer. Latinas Contra Cancer is an organization with a mission to create an inclusive health care system that provides services to the underserved Latino population around issues of breast and other cancers. She’s incredibly smart, so funny, and we had A LOT to talk about. This is the last episode of Season 2 of Black Cancer, and it exemplifies everything we’ve talked about on this platform AND more - more like understanding cancer through a social justice lens, examining the disproportionate philanthropic funding for organizations led by people of color and what our communities STILL do despite structural under-resourcing that determines our health.

P.S. This episode aired the day the United States surpassed 500,000 COVID-19 deaths - half a million people. Disproportionately Black and Brown people. The racial inequities of the life-saving vaccine roll out was absolutely top of our minds - which is why this conversation started A BIT before I even had my microphone set up for our recording! hahaha. You won’t want to miss a single moment of this episode. It’s truly a master class in understanding so many dynamics of cancer care - and what we can learn about the interconnectedness of what care can look like for all our people. And as always, check out the show notes for links to what we talked about.

Here’s my conversation with Darcie:

• Darcie shares about how her father's journey grounded her work in community health advocacy (47:51)
• The strengths and expertise in self and communal advocacy already held in our communities (1:12:00)
• Disproportionality in funding and support for organizations led by and that serve communities of color (1:36:53)

More on this episode:

• Good Samaritan Hospital in California: https://www.ktvu.com/news/good-sam-hospital-investigated-for-giving-vaccine-to-teachers-as-gifts
  • Washington Heights Armory in NYC: https://www.cnn.com/2021/01/30/us/new-york-vaccine-disparities/index.html
• Just Medicine: A Cure for Racial Cure for Racial Inequality in American Health Care by Dayna Bowen Matthew — https://nyupress.org/9781479896738/just-medicine/
• Social Determinants of Health: https://www.cdc.gov/socialdeterminants/about.html
• Latinas Contra Cancer website: http://latinascontracancer.org/
• Latinas Contra Cancer Instagram: https://www.instagram.com/latinascontracancer/
• Promatoras: https://www.cdc.gov/minorityhealth/promotores/index.html

Our guest on today’s episode is Marissa Thomas, breast cancer survivor (stage 2 estrogen positive) and founder of For the Breast of Us, a breast cancer community for women of color.

You know, after I received my diagnosis, it took a few weeks before I texted my doctor, “wait, do I have cancer?” It was after that I started to search for online cancer forums - of any kind, to help make sense of my experience. And, let me tell you, ah - it provided so much relief. Well, up until a point. Being a woman of color is always the lens through which I experience the world and I just couldn’t find anything - anything at all, that could meet me there. I’m so glad For the Breast of Us exists now, because I for sure could have used it back then. A space, similar to this podcast, to be in community with other folks of color grappling with the intricacies of grief, support, and needing to be seen in a system that wasn’t designed to see us. Where else but on our platforms can you engage in a conversation about how lotion saves lives? You’ll have to wait for the last third of the show to get that!

P.S. There’s a story at the end where I basically admit that I”m a terrible human being. Don’t come for me. We all have our journey towards growth and enlightenment.

Highlights from our conversation:

• Figuring out whether to disclose racial microaggressions with your providers (10:25)
  
• Marissa shares about meeting Cristina, another young mother battling cancer (40:59)
  
• Navigating her cancer journey with a teenaged son (1:04:53)
  

More from this episode:

• For the Breast of Us: https://breastofus.com/
  
• For the Beast of Us - Instagram: https://www.instagram.com/forthebreastofus/
  
• Baddies Talk Back: The Burden of Being Strong - https://www.facebook.com/forthebreastofus/videos/baddies-talk-back-the-burden-of-being-strong/327166672043188/
  
• Vanessa Bryant’s Instagram Post on Grief: https://www.instagram.com/p/B77K8XWDY7O/
  

Follow Black Cancer at blackcancer.co and on Instagram at @_black_cancer. Learn more about creator and host Jodi-Ann Burey at jodiannburey.com.

Transcripts will be available on the website a week after the episode airs.