Maui’s Smoldering Multiple Myeloma Story

Maui shares her smoldering multiple myeloma story and the tests and scans she has to undergo to monitor her pre-cancer situation.

In her story, Maui also highlights the importance of self-advocacy, self-care and how the diagnosis helped shift her to holistic options, including CBD oil.

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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I came home and went to the local rheumatologist. They said I didn’t have either of those things, but something was wrong. My blood and urine was off. They sent me to a hematologist.

What happened with the hematologist?

I knew a hematologist was a blood doctor, so I was thinking my blood work was off, but I didn’t think much more about it.

They found out my blood count was low. I was really anemic. They gave me blood and iron. Then he said, “I saw some enzymes and protein in your urine that I’m concerned about.”

I still wasn’t really thinking much of it. He ordered me a bone marrow biopsy because I had a large number of plasma cells. I didn’t know what that was, so I just said okay. I went back to the hematologist on December 11th.

He told me I had multiple myeloma. I didn’t know what that was, so he said, ‘It’s cancer. It’s similar to leukemia. It’s a blood cancer.’

I went from not really thinking much about it to thinking I was going to walk out of the office and die.

»MORE: Patients share how they processed a cancer diagnosis

How did you tell your kids about the diagnosis?

I was so devastated. I told them immediately because I needed them. I was coming home to a home alone.

My mom lives with us, but she was in Miami with family, and my son was at college. I called my daughter. I told her I was picking her up early.

I just talked to them. I told them the doctor said I have cancer, and I didn’t know any other details. But I said, “This is my season. God’s promise is that I’m not going to die in my season.” I told them I was sad and scared, but I reassured them that we were going to get through it. 

»More: Telling kids about your cancer diagnosis

How did your kids react to the diagnosis?

They are handling it very well. My daughter is like my nurse. She’s always there. They have been excellent.

My son takes me to the doctor when he’s in town. He’s always asking me questions and telling me things to ask the doctor.

This taught me a lesson about WebMD and things like it. Everything I read scared me. A lot of it was outdated information.

I know that now because I’ve spoken with doctors, other people who have been through the disease, and research I’ve done.

Smoldering multiple myeloma

A few days before Christmas, I went in with my mom and one of my closest friends. My daughter was home on standby. I went in ready to know what my treatment would be.

He said that it was smoldering myeloma. Then he said, “I’ve had patients who have had smoldering myeloma for 10 years or a month after diagnosis.”

He told me I’d need treatment sooner rather than later, and he said that I’d probably need to talk to him about it the next time I saw him. That’ll be 2 years ago now in December. My numbers have been going down rather than up.

Will you start treatment eventually?

I honestly don’t know. I’m in a situation where everything is up in the air. Everybody is playing everything by ear. It’s a blessing in a lot of ways.

Every time the doctor calls and tells me the report of my numbers, he says, “Wow, I don’t know what you’re doing, but keep it up.”

I tell him, “I’m not doing anything. God’s doing everything.”

Emotions & Support

How has this whole “wait and see” process affected you mentally and emotionally?

It’s been crazy. I suffer from anxiety anyway. This has had me so elevated. I’m just waiting for the cancer to pull the trigger. It’s definitely been a really huge scare.

I’m always nervous and thinking about it. I’m always paying attention to my body. I was having some muscle pain and charley horses. Every time, I’d think, “This is it.”

It’s just scary. I have nightmares about it. Sometimes my anxiety is through the roof, and sometimes I’m level. Sometimes I can’t sleep, and sometimes I sleep like a baby.

It has been the biggest confusion and hardest trial I’ve ever had. It’s horrible, but I’d rather be waiting for something to happen than having something already happen. 

It’s scary because I have two children. I have a son who’s 20 and in college, and I have a 16-year-old daughter who’s a junior in high school. I want to be here for my kids and be here to play with my grandkids. It’s a huge fear.

»MORE: Parents describe how they handled cancer with their kids

Do you ever feel like you have an invisible disease?

What I’ve found is that because I’m not bedridden or going through chemo, people don’t take it very seriously. Just because I’m not terminal doesn’t negate the fact that I have moments where I feel like crap. 

I’m a person that does a lot for other people, and it’s hard for people to grasp me having moments where I’m feeling a little weak.

Some people don’t understand or respect my illness because in a lot of ways, it is invisible. The pain I feel isn’t, but I don’t look like a cancer patient. 

Where do you draw your strength from?

I never knew not to be strong. I come from a family filled with strong black women. My mom is super strong. All the women in our family are strong.

I don’t know how to greet adversity but to fight. That’s all I know. That’s all I’ve ever done, even when I’m scared.

My automatic instinct is to fight. It’s not about tooting my horn. I’m just an ass-kicking woman. I always have been. I came from a line of ass-kicking women. That’s all I know.

Balancing your life, work and family through this process

It’s a struggle. When I need to fade to black, I do. I’ve learned to respect the fact that you cannot be on all the time.

That was something that I needed to learn, because being a social influencer, content creator and event coordinator, I am always on. I always have to be up on trends and information. I write for several publications. I never understood the need to stop. 

In this process, I understand that self-care is so important, and now I know that it sometimes requires you to step away from other things at times. I’ve learned to manage my time and energy to maintain peace and joy.

Reflection and Guidance

What are some ways you practice self-care?

Do you have any advice on self-advocacy?

You have to stand up for yourself. You have to ask questions. Ask the same question until a doctor gives you the answer you feel comfortable with.

Research. You knew nothing at the beginning of this. The information I got was very grim. Now I’ve researched and know a lot more about what I’m going through. Any time I see something new or have a new question come up, I make a note of it and bring it to my doctor. 

»More: Being a self-advocate as a patient

Finding your community

There are so many groups. I found so many support groups on social media. Some of the information may be dated, and some of the conversations may be polluted, but in that you’re still going to find inspiration and connections with some people.

What got you into taking a more holistic approach?

I stopped taking a lot of crappy medicine. I started incorporating CBD oil into my regimen. I take turmeric and blackseed oil. I take some supplements. I take some Advil for the inflammation in my eyes, but that’s about it. 

My godfather had lung cancer, and my godsister had done a lot of research. She had already been telling me I needed to change my diet and things. She did a lot of research on different holistic approaches to help my godfather.

Unfortunately, his cancer was very advanced, but she started passing that research on to me. I have another friend whose father passed from myeloma. They had given him a month to live, and he wound up living for several years.

»MORE: CBD, Cancer & Treatment Side Effects

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Multiple Myeloma Stories