At the 30th anniversary of the Black Women’s Expo in Chicago, the energy on the floor is celebratory. Booths buzz, conversations overlap, and generations of Black women move through the space with purpose. But inside a quieter corner of the event, The Unfiltered Podcast, hosted by Tiffany Whitlow, captures a very different kind of story — one about what it means to love people through illness while learning to navigate a healthcare system that often demands more from patients and caregivers than it should.
This week’s guest, Tawa Mitchell, is no stranger to systems-level change. She is a senior program officer at the MacArthur Foundation, a former board member of the Leukemia & Lymphoma Society (LLS), and a longtime advocate for health access and equity. But in this conversation, her expertise is not theoretical. It is deeply personal.
Mitchell is a caregiver to her husband, a survivor of chronic lymphocytic leukemia (CLL), and to her mother, who is currently in treatment for multiple myeloma and light chain amyloidosis. She also lost her father to cancer. In other words, she does not just work around healthcare systems — she lives inside them.
When a Diagnosis Comes Out of Nowhere
Her husband’s cancer story began not with pain, but with paperwork. In 2011, his job required international travel and a series of vaccinations. Shortly afterward, his neck swelled dramatically.
At first, doctors thought it was an adverse reaction. Steroids brought the swelling down, but as soon as the course ended, it returned. More tests followed. Then came the news: chronic lymphocytic leukemia.
After first-line chemotherapy, he responded well. They got engaged. They married in 2013. And then, in 2014, he relapsed — this time with a chromosomal abnormality that, at the time, carried a grim prognosis.
What changed the trajectory of his life was not luck. It was access.
Through their connection to the Leukemia & Lymphoma Society, Mitchell was able to get him connected to one of the top hematology-oncologists in Chicago. He was started on a then-new drug, venetoclax. Today, he takes four pills a day and is undetectable for blood cancer.
“He’s essentially a walking example of how fast science can change outcomes”, Mitchell explains. “But only if you can get to the right care”.
Why Knowing Where to Go Matters
One of the most practical parts of the episode is also one of the most urgent: Mitchell’s reminder that people living with the condition and families need to know where to start.
She points listeners to credible disease-specific organizations like the Leukemia & Lymphoma Society, as a first step — not as a replacement for doctors, but as a way to understand a diagnosis, prepare questions, and advocate effectively in the exam room. She is clear that second and third opinions are not luxuries. They are often necessities.
“Once you’re armed with real information from a credible source, you can show up differently in those appointments”, she says. “Knowledge really is power”.
The conversation also touches on clinical trials and the complicated history that makes many Black families understandably wary. Mitchell doesn’t dismiss that skepticism. She honors it.
“People’s concern is real and authentic”, she says. “But we can also honor our ancestors by staying informed, getting the best treatment available to us, and not suffering alone”.
The Importance of a Medical Home
Another throughline of the episode is the role of primary care, what Mitchell calls the “medical home.” Google and social media can be useful starting points, but they are not substitutes for a physician who knows your history, tracks your patterns, and knows when something is off.
“You can’t self-diagnose”, she says plainly. “You need someone who can order the right tests and connect you to the right specialists”.
That point becomes even more powerful when she begins to talk about her mother.
A Year to Diagnosis
Mitchell’s mother, now 81, lives with multiple myeloma and light chain amyloidosis. She is in treatment weekly and, by Mitchell’s account, doing well. But getting to that diagnosis took nearly a year.
Blood pressure issues. Swelling. A series of small signs that didn’t quite add up. At her age, it would have been easy for providers to attribute these changes to aging. But Mitchell’s mother knew her body. “This is not it”, she kept insisting.
That self-advocacy is what finally led to the correct diagnosis and the right treatment plan. Today, the medications are working, but they come with real side effects. Fatigue. GI issues. Good days and bad days. The kind of details that never make it into awareness campaigns, but define daily life for patients and families.
Caregiving and the Weight No One Sees
Mitchell is candid about what it means to be a caregiver while holding a full-time leadership role. “It is a mess”, she says, laughing. “I need to do better”.
Her self-care looks like stolen moments: time with friends, occasional travel, the rare massage. More than anything, she talks about community and being surrounded by people who understand the stage of life you’re in and can remind you to breathe, rest, or keep going.
The conversation reframes self-care not as perfection, but as permission: permission to define what balance looks like in the season you’re in, and to extend yourself grace.
Why This Episode Matters
This episode is not just about one family. It is about what happens when access, information, and advocacy intersect.
It shows how:
- The right resource can change the course of a disease.
- The right doctor can change the course of a life.
- And how many people never get either, simply because they don’t know where to start or how to push.
It also quietly makes a case for something bigger: that health equity is not abstract. It lives in referrals. In second opinions. In whether someone believes you when you say, “Something is wrong”.
Tawa Mitchell’s story is a reminder that self-advocacy is not optional, for people impacted by a condition or for the people who love them. If you or someone in your life is navigating a diagnosis, this episode offers both practical guidance and something just as important: reassurance that you do not have to do it alone.
Watch or listen to Episode 8 of Unfiltered: Cancer Caregiving Through an Advocate’s Lens and join the conversation inside the NOWINCLUDED community where real stories, trusted resources, and shared experience help turn survival into something more supported, more informed, and more humane.
