This “A Day In the Life” podcast provides messages of hope and resilience to those in the myeloma community and beyond. This episode features Jameca Barrett, a myeloma patient who helped start the South Side Myeloma Support Group in Atlanta and has been an advocate for herself and for others in the myeloma community for many years.

 

Transcript

Host: You're listening to A Day in the Life podcast brought to you by the International Myeloma Foundation. We hope this podcast will provide messages of hope and resilience to those in the myeloma community and beyond. We hope that this podcast will provide messages of hope and resilience to those in the myeloma community and beyond. Today, we're talking to Jameca Barrett, a myeloma patient who helped start the South Side Myeloma Support Group in Atlanta and has been an advocate for herself and for others in the myeloma community for many years. 

To begin, Jameca, I understand you were diagnosed with myeloma at the age of 26. Being so young when you were diagnosed, how did that affect your personal relationships and career development? 

Jameca Barrett: First of all, it was shocking for my family members and friends. They surrounded me so much with love. It actually brought a lot of relationships a lot closer because of the support. I spent a couple of months in and out of the hospital, so I lost my independency. I wasn't able to handle a lot of my own affairs, as well. That really drove me especially to my family, but also my friends, my spiritual community, church members and things of that nature. It really brought us together. 

It did have a negative effect in my personal life as far as relationship, I was married at the time. It did have a negative impact on that particular relationship but because of the love of my family members, of our friends, and all of that, I was able to get through it. It really was such a great experience in that regard. 

Host: When you were diagnosed, how did they stage the disease at the time that you were diagnosed at 26? 

Jameca: One scan, as I mentioned, I had many hospitalizations. My kidneys failed, at a certain point, I'd be hospitalized for a couple of weeks for that, kidney's back up and functioning. In and out of doctor's appointments. I thought I had a virus. I went to an appointment at a community center clinic in East Point, Georgia and the doctor looked at my lab and he was alarmed immediately so I found myself in an ambulance heading to Grady Memorial Hospital to their ER. Once they received my documents on a previous hospital that I was admitted into, they looked into all the testing that they had done and they said we need to do a PET scan. 

When they did the PET scan, they saw the diagnosis of multiple myeloma. What's so strange is, even at that time, because of my age, the paperwork literally says, we see multiple myeloma but because of her age, it argues against this diagnosis that we actually see. They were able to say to me through that scan. 

Host: After you were diagnosed, what treatment regimen did you begin then? 

Jameca: It was a … treatment. It was a combination of three different drugs and I had to be in the hospital for three days … recommend of administering the drugs into my system. Then after that, they prepared me for a stem cell transplant. It's just very quick. I was diagnosed in December of '03 and by June of '04, I was getting prepped for a stem cell transplant. 

Host: Wow, that's a quick turnaround and it must have been really hard on you to prepare for that mentally. Where are you today with your treatment? Are you in maintenance or remission? What kind of treatment are you undergoing today? 

Jameca: I'm very blessed to say that I am in remission and I have been in remission since about 2005 I'd say, because I had the stem call in 2004, like I said. From there, you go through the normal regimen of follow-up and testing. I immediately went into remission and they give you about a year before they say, "Okay, this looks like you're going to stay in this state for a while." Since 2005, I have been in remission and I've been blessed that I have not needed any additional maintenance drugs outside of that period, which I was on thalidomide, which was the most used, commonly used medication during that period of time with myeloma. 

After I ended that regimen with thalidomide, I haven't had the need of any other maintenance drug. 

Host: hat's wonderful to hear. You've been very involved with the International Myeloma Foundation. Just curious, how did you first come in contact with this organization? 

Jameca: Great medical team support. When I was at Grady and they finally did present me with a diagnosis of multiple myeloma, the team came in with a folder filled with information on multiple myeloma disease itself, and in that folder was information on International Myeloma Foundation as well. It talks about the support group and some other information about multiple myeloma. 

It sparked my interest immediately because I'm so young, I didn't have any clue about this disease, no one in my family had heard of this disease, and so that was my gateway to find out about this disease that I had been diagnosed with and so I contacted them immediately for more information. 

Host: Over the years, you've been so involved with myeloma community. For the IMF itself, you've been a member fundraiser, you've participated in advocacy for legislation that affects myeloma patients. I understand you also help lead a support group in the Southside Atlanta area, and you continue patient and survivorship support in many ways. What drives you to give back to the myeloma community in this way? 

Jameca: Without the myeloma community's role in my personal recovery process, I believe that I seriously would have either experienced a mental breakdown or I would have just become a very negative and bitter person. The fact that all of the people that I've met, all the information that I've been provided with, all the resources that I have been provided with through the myeloma community, that drives me to then be able to offer that to someone else. 

Honestly, all the people have been so inspiring.... a conference or any event that's within the myeloma community and then able to just talk to people from various cultures and economic and social backgrounds, and just have this common shared experience with the disease with them, some journeys in life in general of just surviving the disease drives me as well. 

I would say that I was a patient that really soaked up a lot of information about myeloma. I got insights into knowing labs and definition and treatments and that kind of thing in my particular journey, but being involved in these things have kept me informed and it has kept me being able to have those conversations with other people in an informed voice. That drives me as well because it kind of is my pathway to education as well. I think more importantly, it's just so important to give back. 

There's a song that I love, a certain song I love to listen to, that says I need you and you need me. For me, that drives me as well because I too depend on other people then also, I feel like I'm allowing other people to depend on me as well. 

Host: For other patients who may be a little reluctant to get involved, let's focus on support groups, what would you say to someone who might be reluctant to come to a support group meeting? What would you say are some of the benefits of participating? 

Jameca: ….. multi-cultural and multi-generational groups of people gathering together allow so much knowledge and information and again, encouragement and inspiration to flow through each other. Because people need to hear, see and understand different perspectives, you get so much benefit from what you hear, see, and understand in a support group. There's empowerment. I think everyone gets that when they come to a support group of just being included. 

A lot of times, you can feel so alone and isolated with a terminal illness diagnosis and a support group helps you. There are some people who may not have family and friends in a particular city or state because they moved for various reasons or a job and so it can also benefit you of having that camaraderie of others that you can rely on and talk with as well. Myeloma diagnosis is such a hard disease and journey to go through. Bone pain is no joke and also dealing with all the side effects as well is a lot, so you can gain a lot of knowledge on different things that you can do to help you with those side effects and diseases that maybe you're medically professional may not share with you because they're not familiar with it or again, they're not the patient. They haven't experienced it. So you can also gain so much information from those who are actually experiencing the things that you're experiencing. 

I also think about the fact that I survived so much with people that I have met through the support group and I think about people who I have talked with that I've never met before, just because of a phone call or a conference that has been virtual or people that I have met once through a conference and then we continue to talk, live in a different cities and state. So you also have the opportunity to have an extension of what you typically think of the support group, meaning that this is a place that we meet every month or every couple of months. 

There can be different ways that you can view a support group. I've had a support group that has been just through a phone call of people in different cities and states and to be able to talk to people I don't know, my family members or my friends that I can have different conversations that I know-- How can I say this? That I know I don't have to worry about that judgment later on or someone bringing it back up later on, has also been beneficial and I think people can greatly benefit from that as well. 

Host: You were diagnosed at such a young age, 26, and now you're a long-term survivor. What would you say to someone who is also as young being diagnosed with myeloma? What kind of message would you give them to give them some hope if they were feeling overwhelmed? 

Jameca: o be open to the impact that it will have on the goals, the dreams, and the vision that you have for yourself. Again, because of the fact that multiple myeloma affects your bone system, me personally, I experienced been in the IT field and I was in installation, maintenance, and training, so part of my job every day was picking up these systems and installing them, installing under tight spaces and things of that nature and so when I was impacted with this disease and because my bones were now fragile, I had limitations in things that I could carry and when and how I could move that literally impacted my career path in such a ... way because this was my passion, this was something that I fully enjoyed doing each and every day. 

As a young person, the first thing that you have to be conscious of is being patient with that impact and that change. I would share with them that your outlook, being aware of the emotional toll of that is very vital not only for your survivorship of the disease but just your survivorship of life in general. I also would say that it's an opportunity to rediscover and to develop who you identify yourself as. Rely on your family and friends. A lot of young people are independent. Young adults have already carved their life out and they're not accustomed to then going back to saying I need help or to have to have somebody's help. 

So I recommend and always suggest that you be patient and kind with yourself because you're going to need a lot of help. You're going to need a lot of support to get through the appointments and the treatment especially if you decide to do something like I did with the stem cell transplant where I had to have a caregiver for 24 hours, that was a requirement before I went under with the procedure. So you have to release a lot of that independency that you have developed but also be very concerned with how you're managing your mental health as well because again, it is such a hard disease to deal with and it comes with a lot of baggage so I just recommend that they be open to, if its not family, friends that they can talk with, a professional that they can talk with to help them to get through each challenge and phase of the disease. 

Host: Sounds like patience, self-compassion, support, all of those play a great deal in your myeloma journey and its good advice for other patients as well. One final question I have for you is, the IMF recently started the empower initiative, which is actually partly in Atlanta. It's dedicated to removing barriers to care for the African-American community in improving outcomes in the disease. In your experience, what would you say are some of the barriers to healthcare access for African-American myeloma patients? 

Jameca: I think the first one is having easy, accessible, preventative measures within the community itself, because again, we know that health care is a costly process for patients. If we can minimize a lot of the pre-existing conditions that most people within our community already have before they're even diagnosed with a terminal illness, then that lessens the financial load within that pace of life as well. 

I think there that three other major barriers come into the advocacy, the financial costs of healthcare, and realizing that healthcare is not only a business, it's also a service. For me, all those things blend together and their interdependent on each other. It creates a lot of issues for people within our community. ….you see a lot of people don't have the understanding that they control their healthcare, they control their treatment plans, they control how they're diagnosed. 

They don't know about second opinions, for example and how vital that is when you don't feel comfortable with the answers that you're receiving from a provider. They don't know how to advocate for a different provider if they can't get there for an appointment or they feel like they're just a number to that particular provider that they are seeing. That then leads into some financial cost, because we know there's copay and each time that you ….  there's a cost associated with that. 

Being able to manage the cost of healthcare for many people who may not have the financial stability or generational wealth that other communities have access to, be it ... funds, savings and things like emergency fund, things of that nature, it can become very stressful. That then spills over to understanding that healthcare is a business, but it's also a service. ...always having the understanding that if you go to a restaurant for a nice meal and you order and the order comes and the food either isn't pleasing to you or the service isn't pleasing to you, most likely they'll return it back to that place for a meal again. 

Having that same mindset about healthcare is very important as well. If you're not being treated as a human being or a patient, then most people may choose either to not continue to go or they may contain to go at the detriment of themselves, meaning that the diagnosis is now prolonged or they may be misdiagnosed, which prolongs their treatment, and things of that nature. 

For me, those are the major barriers within our community. I'm grateful that you guys are now focusing on it and helping people understand to take more control over their own healthcare ….  

Host: I think that's a really interesting analogy, the restaurant service line. I think it's really important for people to realize that yes, they do have a voice in their own care. Finally, how have you been doing during the pandemic with all this isolation and how have you been coping with that? 

Jameca: Well, for me it was a little bit easier than others because I had to deal with some additional diseases that deal with the myeloma diagnosis and some of the things that it impacted within my system, I had to go back out on disability again. I was less-- I had to worry about going into an office and reporting to work every day. It was independently in that manner but I didn't get …. n social manner meaning that I didn't get the opportunity to interact and have that fellowship with my family and friends that I needed during this time. 

I took the time to focus on my mental health and my emotional health. I dove into therapy. That was the beauty of Telehealth medicine being pushed a lot more than it was pre-pandemic. I have the ability to just go in front of a computer, I'll put time and have some talk therapy. It led me to even dealing with cognitive function issues as well, that I was dealing with. I was able to focus on that. Financially, it was a little bit of struggle as well because it impacted my ability to get out and do some things that-- What brings some joy. 

I'm trying to redevelop hobbies and things of that nature. It did impact on me in that way …. movies and things like that. Going out and shopping or window shopping, and things like that. They impacted me in that way. Outside of that, it allowed me to really focus on my mental health and get myself a little bit more healed emotionally as well. 

Host: Finally, just going to wrap up. Is there anything else that you'd like to share with listeners that I haven't touched upon? 

Jameca: I would say that if the listeners could recognize and understand that there's a point that comes within survivorship when you no longer need your oncologist as much as you did when you were first diagnosed and you were really going through treatment for some people. It's very important that you have that continuity of care, especially with your primary care doctor and that when you're selecting and when you have your primary care doctor, it has to be someone that you know or have confidence in. It has to be someone that you have a great relationship with on so many levels. 

Also, if they're not familiar with it, here in Georgia, there is supportive care that's now connected to oncology. They help bridge that gap for me between the oncology team and your primary care. They're a blend of both two worlds. I wished I had been introduced to that or that was around in the beginning of my diagnosis. I was diagnosed in 2004. It doesn't surprise me that I've been a part of the myeloma community. I really want them to be aware of that resource for their care because if they're like me, I didn't care for my drugs for my treatment to deal with pain and discomfort. 

Again, I didn't recognize the benefit of the emotional toll that a terminal illness can have for years in your life. My supportive care team with Dr. Kersey has been so vital for me in recent years, with multiple myeloma and also other conditions that are a result of multiple myeloma. I would love for them to be engaged in that as their …. for them in their city or state and take advantage of it if they have access to it. I would like for them to know that your mindset and your mood is a key component to your healing process. Knowing that you can become angered, depressed, down because, again, the financial cost, the emotional toll, the relationships that can be impacted because of the myeloma diagnosis. 

Being able to find some type of positivity in the midst of it can be so helpful to the healing process. Being kind to yourself when you as a young survivor tries to redevelop your outlook in life and your career path if you have to change the direction you have or re-entering back into the career field and having patience with the healing process and transition that will occur. 

Be empowered by knowing that you have full control to a certain extent over your care and your treatment. This is so important. Hold on to that. Know that if you're not comfortable in an appointment or with a provider, you have control over that. You can have that discussion with them, but if they still don't meet that need, you don't have to continue to see that provider. You can have that second and third or fourth opinion if it's necessary for you. This journey of survivorship is a process where you learn as you go. 

Soak up as much as you can handle, but be okay if there's certain times in the journey where you decide, "I need to stop for a moment." That's with a support group, …. to take a break, know that it's okay. You can pace your own journey within this survivorship. 

Sometimes, you also need to be fast learner. That's where your support system and your support group can be beneficial to you because they're someone else who may know or experience, for instance, if you have issues with the visibility process or applying for social security and being denied and things of that nature. Be open to rely on resources. Humble yourself from time to time. Again, if we're very ...people and a lot of times it's difficult for us to be receivers and to accept help, but it can be so beneficial to you to be able to break down your pride a little bit and be open to-- Even if it's social services, to those programs that are available to you. 

I had to change my perspective a lot of times to say-- Especially when it came to government assistance, "My tax dollars when I worked paid into the system and now I'm just benefiting from something that I contributed to." When I changed my way of thinking, then that emotionally helped me to be a receiver of that support and that resource. So I recommend that they be open to that level of thinking and that perspective. 

Finally, just be open to understand that when it comes to decision making, make sure you have a partnership with your care provider. Make sure that you have a care team that specialize in that issue that you're experiencing. We know we have our oncologist for multiple myeloma, but, again, once you're in remission or you're on maintenance drug, and disease has been brought under control, you may still deal with pain. There are pain specialists, so be focused to deal with that. 

If you're dealing with issues with your heart or stress, then you have your psychiatrist and your behavior health specialist, so add them to your team. If you have a diet-- Digestive issues, the issues with …. and things like that, then you can rely on a gastrologist. Just know that your healthcare team may extend to multiple providers nut be open to know that it benefits you to have someone that's specialized with that specific issue that you're dealing with. 

Again, go back to your primary care that's why that relationship has to be very, very connected, and it has to be filled with trust because they need to help you to find all of those additional specialists easily, and they can help you to monitor the things that they're recommending for you as well, and they keep all of those things together. 

I will end with, interconnected with that, is having continuity of care, meaning that, if you can have all of those specialists a part of one or two self-care systems, then that benefits you because then your medical records are all in one place, so they can easily go into a system and see, "Okay, I saw this provider the other day and these are the labs I had and these are the results." …. have is to then have those records sent to their providers. 

I have found that to be so beneficial in my care, especially for new appointments, when they can go on a system and they see my health history, and it's easily available to them. If you can have all of those things as a part of your survival tips on your journey and your wellness and your healing process-- 

I think you will be able to have that mood that I talked about earlier. That positivity, which is so vital to your healing process and you've been able to recover in a healthy way. It just helps you be able to smile and have joy and find so many great things in the midst of all the challenges that you experience as a patient. 

Host: I think those are all really good insights. Openness, patience, self-advocacy and caring for the whole person, mentally, emotionally, physically, all aspects of your care. I think all of your words are going to be very inspirational to our listeners. I want to thank you for joining us today, and I hope you have a wonderful rest of your summer and stay cool down there in Atlanta. 

Jameca: Thank you so much. It's been a joy and I appreciate you guys offering this to people in the myeloma community.