Introduction

I’m a wife. We were high school sweethearts.

I’m a mother of three daughters and a grandmother of a grandson.

Professional, career-oriented, type A overachiever, a Christian, a believer, [and] a family woman.

Initial myeloma symptoms

Armaray is a Black man. I say that because many Black men don’t go to the doctor, but he did. He got yearly physicals.

In 2016, he had gotten a physical, probably July-ish. August [and] September came. He started not to feel well. He started seeing other doctors. He was 57 at the time. They said he had a slightly enlarged prostate. They said, “Go to a urologist.”

Nothing was making him feel better. We get to Thanksgiving. He stayed in bed the whole weekend. We just knew something was going on. We went to his general doctor.

Right around Christmas is when I started getting real concern and pushing his primary care. He told me, and I remember it like it was yesterday, “It looks like Armaray has some compression fractions in his spine.” We’re like, “Why? Where is that coming from?” He had been an athlete and had had some surgery in 2015, but for an L4 and L5. Everything was fine.

He started wondering, Is it related to that? Still, no one knew. They said, “Okay, let’s get scans. Let’s do physical therapy.” Put him in physical therapy. “Let’s get that TENS unit for the pain.” We did all of that. Armaray trying to stretch his back out, thinking that will help.

Realizing he had to be admitted to the hospital

[With] all of those things they were doing, I knew I had to call people. At that time, the oldest daughter was a senior in college, living in the city. The two were in school, one was a senior [and] one was a sophomore in the middle of basketball season.

I knew I had to tell my mom, who was in her 80s at the time. Keep in mind, she’s known him since he was 17. He’s like a son.

He was admitted bright and early the next morning. Here comes the nephrologist and her nurse practitioner. He looks even better from just that one dialysis session. Every single morning that we were in that hospital, the two of them showed up to say, “Here’s what’s going on.”

Imagine being in the hospital [for] a month. There were many doctors [and] many specialists. They would come in and give me, “Okay, he’s probably going to have a blank test today,” or “This is probably what’s going to happen.” It kept me [in the know].

My sorority sister gave me a binder that first week. She said, “Listen, it’s going to be a journey. Take this binder. Write everything down. When doctors come in, write down their names and who they are.” I did exactly what she told me. But things started to happen.

They would talk to me. “He needs this surgery.” His lesions were up and down his spine. He needed to have what’s called a kyphoplasty to shore up the spine to make it more stable. He was too sick to give consent so, of course, I had to do that.

Diagnosis

Taking on the myeloma caregiver role

In the beginning, things were happening so fast that I couldn’t fall apart. I had to get the information. I didn’t cry when the doctor would tell me whatever. My crying took place at night when I’m on that couch in the hospital room [where] they made my bed.

He’s sleeping. I’m crying and praying. Prayer got me through. I would leave his room sometimes and sit out in the lobby area. I would call close friends. I have some close friends that are like sisters to me.

I called my own doctor, who’s a very close friend of mine. Doctors just tell you matter-of-factly and that’s how she did it. She was like, “Look, if it is that, here’s the deal. It is incurable, but it is treatable. It’s going to be rough in the beginning.” I remember those words distinctly.

I was having those kinds of conversations with my mom, with my sorority sisters, a friend from church, and my pastor was also dropping in. He would show up at the hospital [late] at night because he could always get in. 

I started to make notes to myself about the business [and] things that needed to be taken care of. That’s when the shift happened. Crying, sitting in that hospital, we had no idea how long we would be there. I knew that I had to take care of some things. 

I’m a lawyer. I have been for 37 years. I also have a market research consulting business. I used to work at Procter & Gamble when I was in law school. Meanwhile, I’m sitting in a hospital room, thinking I have a mortgage to pay. 

Financially, I had to make sure we were good. But I also knew that there were things like disability. At some point, the diagnosis came so I’m like, “I should probably check about disability.”

I had a fight with an insurance company that I won’t name because they started sending me letters saying you took him to this hospital and it is out of network. I’m like, “You must be kidding me. I don’t know if he’s going to walk out of here and you’re talking about out of network?” I won that fight because I took him to [the] ER and when you go to an ER, who cares about [the] network?

The doctors were cheering me on. I started establishing relationships with all of them. “Marsha, what’s going on today?” They were asking me about the business of it all. “Did you beat the insurance company yet?” “What about Medicare? What about Medicaid? What about disability?” That was the relationship and that was the environment in that room.

If I leave the hospital to come home to shower, to lay down for a minute, a nurse would have my phone number and would promise to call me if anything went down in that hospital room.

Treatment

The doctors said to me, “We want to start treatment,” which they did, and that was the treatment he was allergic to. It was two shots that I remember that nurse coming in one shot one week, came back, and gave a shot the next week. Then his lungs started bleeding. They figured out that’s what it was.

I have to say that those two shots knocked much of those bad cells out tremendously. There’s always a good and a bad. I’m thankful because it knocked the M protein way down, but they had to stop it.

He had to stop all treatment for some months until his lungs got clear and they figured it out. But the doctor said, “Here’s what can happen. We need to treat him. It could be we’ll never give him that again, but it could be pills.” My big question was always: is it chemotherapy?

They were throwing around the word “immunotherapy” and they had to explain that to me. When they started treatment again, they did start him on a regimen of some of the therapies, the pills.

I had to be very careful with those. Those things were scary. When I came home, they were like, “Don’t touch them, and don’t let anybody who might be pregnant or would get pregnant in the future touch them.”

Pretty early, they started talking to us about a stem cell transplant. He was diagnosed [on] January 17. By March 18, he had a stem cell transplant.

Advocacy

What was the shift for you?

My husband started getting better. That was when it switched in my mind. You can be an advocate for other people because home is taken care of to a degree. Things have settled down. You need to give back.

The advocacy that I do now is the “give back” part. I never want anyone to be caught off guard [by] multiple myeloma. I know there are a lot of other things out there to be caught off guard about, but for me, it’s multiple myeloma.

If you know what it is, know enough to ask your doctor what it is, that is what I’m trying to do. I share with people what it’s about.

Once you are taking care of someone with myeloma, be their advocate because it’s a journey. It can be challenging at times so they need somebody.

We are often diagnosed with low risk. However, we’re dying more.

Then we’re into the whole health equity, disparities, and inequities space. When I look for people to collaborate with, I’m looking for people in those spaces because those organizations and those people get it. If we could just get equitable treatment, we could have better outcomes.

Now I want to be clear. I want everyone to have great outcomes, but I also want African Americans to have outcomes that could be greater because we’re getting the same care or equitable care.

It goes back to awareness. We don’t know there’s such a thing so that’s where it starts.

I’m doing a campaign now. “Doctor, could this be multiple myeloma?” If I could teach everybody [that] if you’re not figuring out what the diagnosis is, you don’t know what’s wrong, [and] you have these symptoms, to say to your doc, “Doctor, could it be multiple myeloma?” Because then the testing could start.

The first thing is we just don’t know about it so we’re not aware of it. We’re not educated about it. But then even when you think about diagnosis, there [are] still these disparities.

Importance of testing

It’s huge. Those are difficult medical things. Some stuff still just kind of goes over my head and I’m just like, “Oh, I can’t even understand that.” But what I do know is: ask. Know enough. For instance, know the common signs and symptoms.

You get your blood work done. It could be high calcium, there could be renal dysfunction so your kidney numbers might not be right, you might be anemic, and you could have bone pain. Those are the big ones. The acronym for that is C.R.A.B.

Know enough about that that if you’re going through something, you ask your doctor. “Doctor, could it be multiple myeloma? Can you test me for it?” You don’t even have to know what the tests are.

Here’s one thing that happens in our community. Everybody Black is told that we’re anemic. At some point, all five of us in our house have been told that we’re anemic. And I heard one of the Black myeloma specialists say, “We’re not anemic just because we’re Black. We’re not anemic because we have this melanin in our skin.”

Push back on your doctor because it could be something very simple — you need to take iron pills — or it could be something very serious — like myeloma.

That’s what I say to people. You don’t have to be a doctor. You don’t have to know every single thing but ask questions, demand time to be heard, and push for testing.

I always say to people who are then diagnosed: have somebody go to appointments with you or somebody to be there for you [to] take notes because you can’t get everything. I automatically take notes because that’s what I do, but not everybody does that. You can even take notes on your phone. There has to be a level of self-advocacy in this space that will serve you well.

Importance of having family conversations

[In] the Black community, we don’t always openly share. It’s not because we don’t want to help our families. I’m thinking about my generation. We were taught that what goes on in our household stays in this household. You will not go out of this household talking about what goes on.

When my husband got sick, my first go-to was we will not play this out [on] social media. Even my generation, that’s what I think about. That can be a concern in the Black community because we absolutely need to share, especially with our immediate families. 

I just say to families: share as much as you’re comfortable with. Send this brochure out to your circle. It’s about myeloma. Just share that. You don’t have to share anything about [yourself], personally, but share the information.