A Day in the Life Podcast - Marisel Brignoni
This "A Day in the Life" podcast provides messages of hope and resilience to those in the myeloma community and beyond. In this episode we're talking to Marisel Brignoni from San Juan, Puerto Rico. Marisel is a FEMA disaster relief specialist who's working on the disaster relief for Hurricane Maria in Puerto Rico, from San Juan. She's a mother of two and she's also a myeloma patient and a strong supporter and advocate.
IMF Communications: You're listening to the “A Day in The Life” podcast, brought to you by the International Myeloma Foundation. Today we're talking to Marisel Brignoni from San Juan, Puerto Rico. Marisel is a FEMA disaster relief specialist who's working on the disaster relief for Hurricane Maria in Puerto Rico, from San Juan. She's a mother of two and she's also a myeloma patient and a strong supporter and advocate. To begin with, Marisel, when were you diagnosed with multiple myeloma?
Marisel Brignoni: I was diagnosed in December 2013 and was 36 years old. I spent a year and a half searching for a diagnosis. Because it was, all my Labs were abnormal. But they didn't define exactly what was happening. After I spoke with my doctors, they did a biopsy in my axilla, and they found encapsulated amyloidosis. That was when my journey started. And they gave me a bone marrow transplant. And then we confirmed that I have multiple myeloma. But we spent a year and a half looking for a diagnosis. So, in my case, it wasn't so easy to be diagnosed.
IMF Communications: And were you treated in Puerto Rico or were you, I understand, maybe you were in Florida at the time?
Marisel Brignoni: No, I was in Puerto Rico. That was very difficult at the beginning. When I was diagnosed, he told me: “Marisel, you're going to start treatment, and then you're going to pass a bone marrow transplant autologous.” And the first thing that passed through my head was, do I stay in Puerto Rico? Can I go to the United States? What should I be doing? Because on the island, we did not have a lot of information. We didn’t have specialists in multiple myeloma at that time.
So, it was very scary in the beginning. I was a single mom with two kids. My son was three years old at the time. My daughter was, she was 17 years old. So, it was very, very difficult for me and my family with this diagnosis, and I lost my job one month after I was diagnosed. So, I was stressed out, figuring out what will be our next step without a lot of information. So, I would trust my doctors, and we went straight to the chemo, and I got Revlimid and Velcade, and then they started the treatment for starting the bone marrow transplant autologous. So, I did everything on my island.
IMF Communications: Okay, and then I know, as I understand it, you had gone to Florida for some treatment as well. Is that true?
Marisel Brignoni: Yes, I went to Florida to have a second opinion because when I think about my bone marrow transplant, I started to see a few labs, because you start to understand your disease. And you start to learn how the labs should be. You start to see what the highest numbers and everything will be — the M-spike.
So, you started to talk to the doctor and say, the disease is coming, do I need to start on another treatment? Is this normal? And I didn't, in the beginning, feel comfortable. And I'm very proactive. I'm not a reactive person. So, I tell my doctor, “I love you a lot, but I want to have a second opinion to be sure if there's any other treatment out there that will be capable?
So, at that time, we waited. On 2 February 2020, COVID-19 started, I had a relapse. And I had to decide to have a second treatment and go to my second bone marrow transplant autologous because my brothers are not a match with me. So, my doctor, due to the amyloidosis, didn’t want me to wait. We decided — thanks to a lot of webinars and podcasts from the International Myeloma Foundation, I learned a lot of processes about how we, with COVID-19, start to manage our treatments and analysis. So, that helped me a lot to choose to undergo a second bone marrow transplant.
IMF Communications: Are you on any sort of maintenance therapy currently?
Marisel Brignoni: Right now, we are waiting on my labs to decide what will be my maintenance. Because I was the first patient on the island to have tests for minimal residual disease. That was key for us to make the decision for the correct chemotherapy treatment. When we should be doing that second bone marrow transplant. That was key for me, that test. So, I was blessed because of that.
IMF Communications: So, it must be very difficult to keep working during this time. I understand you're a FEMA disaster specialist, that sounds like a pretty stressful job. What is it like working and living with myeloma?
Marisel Brignoni: I have to say it is very harsh. It's not easy having a kid with virtual homeschooling. And now, they have started school and I’ve been teleworking since COVID-19 started. And we manage a lot of the processes for their recovery. And we manage all the emergencies that we have on the island.
Because we have earthquakes, and now, the COVID-19 situation. So yes, a lot of stress. But I have great support from my family, and my co-workers helped me a lot to manage. I have to tell you that I use a lot of mental health. I have to go to a psychologist to help me to pass this process, and also with the family. Because sometimes we think about ourselves, and we forget that the family's key to our recovery, or to manage to live with multiple myeloma. So, I think that, for me, it has been key to managing work and my leaving.
IMF Communications: What type of family support do you have?
Marisel Brignoni: I have a great brother- and sister-in-law. They both leave early for me. I have my boyfriend, he's a veteran, so he has that stress. He’s a pilot, so it is a stressful job for him. But we try to do things at dinner. And we’re always talking to each other. Every time that I have a process, I speak with my doctor, and the doctors include them. So, that is great.
And I'm trying to start a support group on the island because we don't have one now for multiple myeloma patients. I think that that will be key for us. You can talk with other patients that maybe help us to express ourselves and feel that we are not alone.
IMF Communications: Exactly. And speaking of that, we talked about the theme of resilience, which has been a big theme, that the IMF has put forward in our Myeloma Action Month Campaigns, and also IMF Chairman of the Board Dr. Brian G.M. Durie often writes about it in his blog. And the way that we have seen it defined, and we define it, is it's the ability to adapt to new challenges and difficulties. And as an individual and as a myeloma patient, what does resilience mean to you?
Marisel Brignoni: I have to say that that resonates with me, not only because of my disease but because I have always said that disease doesn't define you as a person. As a Puerto Rican, when we passed Hurricane Maria, that word, for us was huge. Because we feel they mentioned a lot that Puerto Rico was resilient. I think that when I was diagnosed, it's not that I am a resilient person. I cannot be resilient without my co-workers, without my family, without my daughter, without my son.
I think that what makes us strong, and as you mentioned, is that we must leave adversity, transform, emerge stronger, and overcome all of this. Resilience is that mother who sees you and feels you laying in bed and tells you you're going to be better tomorrow; brothers and cousins, the family who calls you to make jokes when you are in a hospital bed. Friends having a party via Skype call you, and you feel out of it. I think that I cannot say that I’m resilient without saying that I'm a mother, sister, daughter, girlfriend, partner. Although, resilient family and friends, I think that they are the ones who make us resilient. They help you grow. They help you because sometimes we have to wind down. Sometimes, we have to say to ourselves, I'm not feeling well today, I'm bad, I have pain. You don’t face everything with a smile.
Why? You have to feel sad. You have to feel bad, but family, friends, partners, boyfriend, husband, whatever you said, they are just as resilient as you are. They are the ones that will help you to – OK, let's get up. Let's be good. The best that we can do today.
IMF Communications: That's excellent. So, the community is obviously very important.
Marisel Brignoni: Yes.
IMF Communications: You might have heard the news that Yelak Biru—who is a patient that has been living with myeloma for 26 years, he's also a data and analytics specialist who has worked in a lot of different organizations —has recently joined the IMF and is going to be our CEO. And ... Yelak is a great speaker. He’s spoken at many Patient and Family Seminars. One of the things that he often says is “we are not our disease” about myeloma patients, that “myeloma is over here, and the person is an entirely separate identity from the disease.” Does that sentiment resonate with you? And why?
Marisel Brignoni: Yes, I remember when I spent one year looking for what was happening to me. When I finally got my diagnosis, people looked at me and said and asked me, are you sad that you found out about your condition? And as such as delicate and critical diagnoses, such as multiple myeloma. You can say it, with a smile, and that's because what I’m fighting already has a name. Now, I'm taking my life purpose and we'll fight it. When you are sick and you don't know what is happening to you, you cannot manage. But when you know what is happening to you, you start to learn and you start to educate yourself, and now you'll have the tools to manage it. So, I have always said, now it has a name and last name. Now, dealing with that just Marisel Brignoni and multiple myeloma.
IMF Communications: Great, and also, you're talking about how you have been part of the community and also very active with the IMF. I understand you recently provided resources in Spanish to Spanish-speaking members at a support group meeting. Given that, how was that experience for you?
Marisel Brignoni: That experience was very special. As I told you, in the beginning, we didn’t have a lot of resources in Spanish, no websites, or webinars that can explain the disease in a way, as Puerto Rico says, in terms of “rice and beans.” That's our term for when you can explain something very simple and easy. We say in rice and beans. So, I think that it will be a great opportunity for us to start to educate in our language. Hispanics are very charismatic and, also, we love to talk. So, to be able to speak in my native language was really a blessing.
IMF Communications: What do you think we can do as a myeloma community to better serve Spanish-speaking members of the community?
Marisel Brignoni: The Spanish language is a very rich one. Every region speaks very differently in its own way. So, I think that it's very important to become very familiar with their audience, whom you're speaking to. Those that are in Texas, or those that are in California. I think that, when we start to understand a little bit more about their environment, it will be good for us to incorporate it. And they're going to start to talk to each other, and then it will be a great connection for each Hispanic.
IMF Communications: And what kind of other passions do you have? I mean, you have a very stressful job, you’re a mother. What are some of the things that you personally enjoy that you'd like to share?
Marisel Brignoni: I love to have that kind of voice to those who are Hispanic, that the speaker has multiple myeloma. I think that I would love to be that kind of voice for them. Find out ways that can help in situations. And allow having treatments in places that, sometimes, we don't have, just in Puerto Rico.
In the beginning, we didn’t have doctors. Now, we have two. And now, we are thinking of bringing treatments with CAR T-cells, and seminars, so that not only patients but, also, caregivers, can understand the disease. So, I think that would be a blast for us. And having the best doctors will be a great success for us in having hope for this disease.
IMF Communications: I think I asked you all the questions I had planned. Is there anything that's on your mind that I haven't covered, that you'd like to share?
Marisel Brignoni: I wanted to thank the International Myeloma Foundation for giving me this opportunity and for giving every patient a place to speak and help others. A place that we can go. They’re always available, the doctors always have resources, and they treat you like a family. I think that this is something that we miss. And I'm looking forward to having more resources in Spanish and helping others to find a way to have treatments. Not only treatments but also support groups that can help them to pass this condition.
IMF Communications: Yes, we're also looking for that in the future at the IMF. I want to thank you so much for your time today. Thank you to our listeners for joining us. You've been listening to the “A Day in the Life” podcast, brought to you by the International Myeloma Foundation. Today, we've talked to Marisel Brignoni from San Juan, Puerto Rico. To learn more about the IMF and myeloma, visit us at myeloma.org