Ellen Dillard keeps it real on the topic of multiple myeloma

As a nurse practitioner in Detroit, Ellen knows exactly why it’s so important for us to get the facts on multiple myeloma. She talks with D.L. about how the disease disproportionately affects Black communities and tells us what we need to know about early diagnosis and treatment.

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D.L.: “What is multiple myeloma?”

Ellen: “So multiple myeloma is a rare blood cancer, um, that most people think can't happen to them. It can disproportionately affect African Americans and that's why we need to take it seriously.”

D.L.: “Tell me a little about, bit about yourself.”

Ellen: “Um, my name is Ellen Dillard.

D.L.: “Mm-hmm.” <affirmative>

Ellen: “I'm a family nurse practitioner.”

D.L.: “Mm-hmm.” <affirmative>

Ellen: “Um, I've been a nurse for about 11 years.”

D.L.: “Um, 11. You look like you only been alive 11 years.”

Ellen: “Oh.” <laugh> “No.”

D.L.: “What, uh, what, what got you into nursing?”

Ellen: “Um, actually my godmother, so my godmother was a nurse. Um, she was a psych nurse, um, and kind of just shown me like the passion of nursing. She unfortunately passed away from breast cancer. So that’s kind of what got me into, um, oncology.”

D.L.: “It is a fact that multiple myeloma disproportionately affects Black communities. To bring awareness to this silent threat, I sat down with the loved ones of luminaries we lost to the disease as a part of the That’s My Word campaign. It’s all about real people, who keep it real on the topic of multiple myeloma and speak to the true impact the disease has on us. That’s My Word.”

D.L.: “Now you are in hematology and oncology—that's what you specialize in.”

Ellen: “Yes, yes.”

D.L.: “Um, and you mentioned this earlier and I'm, I'm, I'm, I'm just gonna piggyback what you were talking about. What is multiple myeloma?”

Ellen: “So, multiple myeloma is a rare blood cancer, that causes abnormal plasma cells in the bone marrow.”

D.L.: “What are some of the symptoms?”

Ellen: “So anemia is very common. Bone pain. Um, some people can misconstrue that as just like muscle pain. Oh, I was lifting this, I was doing that. Um, but it's not going away and it's getting worse. And that's something that brings them in. Um, also kidney dysfunction. If they're having any problems with urination, and if they're very like tired, fatigue, confusion can all be symptoms of hypercalcemia.”

D.L.: “Those are, those are kind of nebulous. Like when it comes to symptoms. Um, you know, ’cause I don’t—every day some-, and I'm, I'm not even trying to be funny here. Every day something hurts. Every day I'm tired, you know, or every day you lose ap-, you know, so there's so many things that are just, more than likely, most likely they're benign. But sometimes they’re not.”

Ellen: “Most likely. Yeah”

D.L.: “So when it comes to symptoms, um, what is the difference between something that you live with, you know, every day? The onset of something or something that seems a bit more serious?”

Ellen: “Um generally if it’s acute it’ll be a few weeks. You know, if you sprain your ankle, um, it may or, you know, pull a muscle, it may take a couple weeks to heal.”

D.L.: “Right.”

Ellen: “Then you'll generally get back to normal.”

D.L.: “Right.”

Ellen: “Or symptoms will go away.”

D.L.: “Right.”

Ellen: “A lot of the symptoms that we're talking about are gonna persist for much longer.”

D.L.: “Right.”

Ellen: “Six weeks and beyond. And it's not gonna get better.”

D.L.: “Right.”

Ellen: “It's gonna get worse.”

D.L.: “And, and from my understanding, it disproportionately affects people of color. Why, why would, is there, is there like an environmental impact? Is there, like, is it diet, is it, is it heredity? Is it, like, why is it, why does it affect us, uh, people of color, disproportionately?”

Ellen: “Risk factors, um, can be related to kind of all of those things. So, um, it disproportionately affects males. Um, African Americans can be related to many disparities. Um, such as, like, obesity.”

D.L.: “Right.”

Ellen: “Which can be related to environment, access to healthcare, um, socioeconomic status. For Black people, the average time between diagnosis of multiple myeloma and treatment is about two times longer than white people.”

D.L.: “Um, it's interesting you were talking about the fact that you, uh, you know, you, you practice in Detroit and one of the things that happens, particularly with Black people, is there's a, there's a distrust between our communities in general and the medical communities. And I think that one of the things that's important is that you have a relationship, um, with a doctor. And I think one of the things that really makes this disease hard is ’cause there's a natural reticence for us to go to the doctor anyway. And then, um, I think for, for a lot of Black men in particular is knowing something is always easier than saying it out loud. And they’re... that coupled with the distrust and, and, and not not knowing what to do and how expensive it is, so those things factor in.”

Ellen: “Yes.”

D.L.: “And, and so let, let's, let's, let's, uh, work with that for just a second. Um, you have any symptoms which, and if you're not having symptoms, it can be caught early if you have uh, regular checkups, per se, right?”

Ellen: “Yes. Yeah. You can definitely be asymptomatic.”

D.L.: “When you find out, uh, when someone is, is going through the process, what would you say are the reasons that, that they need to identify this early and begin treatment? Like what are some of the advantages to that happening?”

Ellen: “Early detection leads to better outcomes. If you catch something early on, they can start on treatment right away.”

D.L.: “Um, so why is early treatment? Uh, uh, ‘cause there's no screening mechanism for, for multiple myeloma?”

Ellen: “Um, so with myeloma there is no specific early detection screening.”

D.L.: “Right.”

Ellen: “Like with breast cancer, prostate cancer.”

D.L.: “Right.”

Ellen: “Which is why we need to have these conversations in order for people to make sure they're getting a regular follow-up, making sure they're, they're going to the doctor, making sure that they're having those conversations with the providers, especially if they have a family history.”

D.L.: “Why is it important to ask questions and to, if you're not gonna be able to be an advocate for yourself, to have at least somebody in your life that can ask those kinds of questions and get you kind of the real, uh, answer that you need as opposed to, uh, you know, kind of being misinformed and, and, uh, taking the wrong path?”

Ellen: “Um, it's important to advocate for yourself, um, just to understand, to have that knowledge, to be able to make an educated decision about your care, about your life. If someone tells you, hey, you're gonna do this, that, and the other, but you have no idea what that's gonna be, how can you make an educated decision about if that's something that you want to do?

Um, and also I would say, um, having support, um, involving your family and your friends in your care, because it, it literally takes a village with anything, any cancer diagnosis, really.”

D.L.: “Are there resources that are, are, are, uh, dedicated specifically to this disease? Uh, multiple myeloma?”

Ellen: “Yes. There are resources through different foundations. Um, there's resources through pharmaceutical companies, specifically, um, like Janssen, they offer patient support. Um, but you kind of have to look around or ask your provider about those resources.”

D.L.: “Is there, like a, a website or a place, uh, where people can go to get all the facts on multiple myeloma?”

Ellen: “There’s great resources out there. You can go to That’sMyWordMM.com. There’s also a Facebook and a Instagram page with all the information we need to know about the disease. They did all the heavy lifting for us.”