Maui’s Multiple Myeloma Story: Smoldering Multiple Myeloma (SMM)
Maui shares her smoldering multiple myeloma story, and the tests and scans she has to undergo to monitor her pre-cancer situation.
- Name: Maui Bigelow
- Diagnosis: Smoldering Myeloma
- Early precursor to active multiple myeloma
- 1st Symptoms: Inflammatory eye disease, uterine bleeding
- Protocol: Routine biopsies and scans
When I need to fade to black, I do.
I’ve learned to respect the fact that you cannot be on all the time.
- Treatment and Decisions
- Emotions & Support
- Reflection and Guidance
What were the first symptoms
I had been having other medical issues. My uterus was enlarged, and I was bleeding really bad. I received 20 units of blood in one year. I had that issue, but I also have an inflammatory eye disease.
My eyes kept flaring up. They’re red, sensitive to light, and I have floaters. It’s a pain that I can’t really explain. It also makes my stomach hurt. Apparently, eye problems can cause stomach pain.
How did you get diagnosed
I went to Emory. When I saw an eye doctor there, she said, “You’re having inflammation in your body. I think it may be Lupus or Rheumatoid Arthritis, but I can’t diagnose you with that.”
She told me to go home and find a rheumatologist because it wasn’t my vision or my eyes. She said the eye issues were caused by something else.
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 11.
I went from not really thinking much about it to thinking I was going to walk out of the office and die.
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.
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.
Treatment and Decisions
What happened after the diagnosis
He printed information off of the internet and sent me home. All of the information he gave me and everything I found on my own was grim.
It all pointed in a bad direction. I was at a loss. I really didn’t know what to do.
I was supposed to wait to see him again in a few weeks, but I bullied my way back into that office.
I was calling the nurse every day telling her I was nervous and wanted to come in. She finally said, “Okay Ms. Bigelow, the doctor will be in on this day. Go ahead and come in.”
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 ten 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 two years ago now in December. My numbers have been going down rather than up.
Did you get a second opinion
I ended up going to one of the top myeloma specialists at Emory. Once my eye doctor at Emory found I had been diagnosed with myeloma, she wanted me to see an oncologist at Emory.
She referred me to the specialist there. My local oncologist actually had said that if I wound up needing any treatment, I would need to go see the same doctor as well.
A girl I went to college with ended up being his head nurse, so that was really cool. With two separate referrals and that, I felt really good about being his patient.
He’s still doing tests. We just did a biopsy, and I’m about to go back for a PET scan. I’ll see my new doctor that day, too.
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.
How do you cope with the fear?
Prayer. Meditation. Whatever I can do to remain positive, like surrounding myself with family and friends who keep me encouraged. I read a lot. I’m not a church person, but I am a spiritual person, so there’s that aspect.
As a social media influencer with such a large audience and being a source of empowerment for other women, I’ve been able to draw so much from their love and support.
It’s been a number of things definitely. I still have my moments though, don’t get me wrong.
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
I make it a habit to make time for myself. I preach it to other women all the time: You have to choose you first.
The world will take so much from you and be so demanding. You have to choose you first.
Even in medical situations, I have anxiety and other things going on. I was seeing so many doctors and getting pumped full of so many meds and having so many tests done. I had to take a step back.
I wanted to choose what I needed to do for my body. I didn’t take what the doctor said as gospel. I found out what felt good for my body.
I try to spend time with myself. I try to set boundaries for other people. People will drain you and stress you.
Stress is not good in any situation, but it’s especially not good when cancer is involved.
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 comes up, I make a note of it and bring it to my doctor.
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 gonna 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.
Do you have any advice for someone else in your situation
For some individuals, prayer is the first thing you need to do. You need to not be afraid to lean on the people that love you. I’ve always been the strong friend. It was hard for me to put that weight down and let people be there for me.
Stay as positive as possible. I know it’s hard to stay positive when you have something that might potentially kill you, but try your best.
Pray. Remain positive. Allow the people who love you to love you. Educate yourself about the disease, but do not obsess. Become knowledgeable. Don’t be so afraid that you don’t ask questions.
You’re not a cat. You don’t have nine lives. You should be your priority.
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