IMF Communications:
You're listening to A Day In the Life Podcast, brought to you by the International Myeloma Foundation. We hope that this podcast brings you messages of hope and resilience to the myeloma community and beyond. I'm here at the 23rd annual Support Group Leader Summit in Phoenix, Arizona, and I'm sitting with Valarie Traynham. How you doing Valarie?
Valarie Traynham:
Doing great, Jason. Thanks for having me.
IMF Communications:
I'm so excited to be talking with you today and I'm especially excited that we're here in person in Phoenix at this event. It's been two years since the last in person support group Leader Summit.
Valarie Traynham:
Yes, yes. It's been a long two years. I mean, even though we had them virtually it's just something about seeing your friends and fellow support group leaders in person. You can give them a hug, you can say hi, and just see that real smile, just light up.
IMF Communications:
How's the summit been for you?
Valarie Traynham:
Oh God, it's been amazing. You know, it's the, the different presentations that we've been having. I particularly enjoyed the presentation this afternoon with Sherry, and the two Kellys, and Nancy, you know, about leadership and, and some of the things that we can do with our support groups, and being prepared and things of that nature there. It's been very good to hear some of those things.
IMF Communications:
Yeah. Anything in particular stick out to you?
Valarie Traynham:
Really listening to what the support group needs are, and really working to meet those needs. You know, because we are here to serve them, to help them, the members of the group here. So, yeah.
IMF Communications:
So for those who are not familiar with your story Valarie, can I ask you, how did you find out about your myeloma diagnosis?
Valarie Traynham:
Yeah, so, my myeloma diagnosis came, I had nose bleeds, I had just feeling tired, fatigue, but it was just about the flu that I couldn't shake. It really sent me to, to see my primary care physician, and it was picked up pretty quickly. You know, she ran a, a panel, the whole panel of labs and everything, and she's like, "You got kind of like some high protein here, so I'm gonna send you to see a hematologist." And it kind of went from there. It went very quickly from that point on.
IMF Communications:
And were you working at the time?
Valarie Traynham:
Yeah, so I was working full time, I was working in human resources. I was, I had went back to school and I was very active in my church, so it, I was doing life, you know? Everything that I was enjoying doing, I was doing it. So it was kind of a shock, you know, and, and there were symptoms there I should have known, but I wasn't thinking that it could be cancer or any kind of sickness, actually, I just thought it was, I was burnt out trying to do a lot and, yeah. So I, I didn't expect that at all.
IMF Communications:
Yeah. Do you remember how you happened to feel in that moment when, when it was brought up?
Valarie Traynham:
Yeah. I do remember that. I remember like it was yesterday, I was very scared. I was fearful, even though I had my very good friend there with me, you know, when I was diagnosed, I still felt alone because it was like, I have cancer. I don't know anybody that has cancer, you know, to that magnitude. So it was really just fear, you know? I always say it's like the deer in the headlight looks. It's like, what is that? How am I gonna bounce back from this? You know, what am I gonna do? I just felt that all control was gone, you know what I mean? We don't have control over anything, we think we do, but I just felt like, okay, this is something I have no control over. It's incurable, there's no way. What can I do, you know, to, to make it better?
IMF Communications:
Did you tell members of your family right away, and how did they react to the news?
Valarie Traynham:
No, I didn't. I waited. It was, it was about a couple weeks before I, 'cause I didn't know how to tell them, you know, my family lived not, you know, I had moved away from my family, so I didn't have my family close by and I was, it was like to pick up that phone to just make that telephone call to say, "Hey, this is what's going on." It was so hard. I didn't know where to start, what to tell them, because I didn't know what the disease was. And I knew that there would be questions, "Well, what is that? How did you get that?" You know, "Where did that come from? Is it hereditary?" You know, and these things I didn't know at that time, and I didn't know where to go to, to find that information to give them. So I just kind of sat on it for a little bit there and pondered what to do.
IMF Communications:
Ultimately, where did you end up finding information?
Valarie Traynham:
So after I, I searched Dr. Google, I think that's something that we, you know, most patients do, that's the first thing they do, they turn to Dr. Google. And, and it was in that Dr. Google search that I saw some information on, on the IMF. And I was like, oh, so this, you know, it's giving me information that is, is relevant. It seems up to date, it seems like, you know, I could learn a lot from this. And that's kind of where my myeloma journey began to finding out information about this disease that had invaded my body. You know, I'm like, I gotta do whatever I can to, you know, figure out what it is. Trying to get back some control, you know? If I know a little bit about this then I'll know what to expect at some point, you know, as, as we go there.
IMF Communications:
Were you initially receptive to the idea of joining a support group?
Valarie Traynham:
No. No, not initially, but the more research that I did, the more I found out about myeloma, and my family being a great distance away from me. I had a great group of friends, you know, my church family was amazing, but they couldn't relate, you know? Certain things that I was going through and I would talk to them about and they just, you know, it, they couldn't relate. And that's when I was like, I need a support group. I need somebody who has been on this journey that can, you know, kind of guide me and let me know that what I'm feeling is normal, and what I'm feeling, I'm not gonna always be feeling this. So that's when I saw the need for a support group. Where I lived there wasn't a support group and I, I used to go, I still go to this, at the local cancer resource center.
And they would have support groups, but there was no myeloma, there was, we didn't have any of the blood cancer groups at that time. And I would always ask, you know, when are you guys gonna get, you know, a blood cancer group, or myeloma group or something, you know, I'm, I'm desperate. I'm, I said, you know, if I'm like this, I know there are other people out there also.
So it was about, oh, I'm gonna say maybe eight, nine months later, you know, there was a, a support group that was formed. It was actually formed in the city of Chicago, and the young lady moved out to the Aurora area and kind of brought the support group with her. That I, I just was so excited when they were like, "Valarie we got a myeloma support group." I was like, yes, yes, yes, yes! When is it meeting? You know, I wanted to be there for it. And yeah, it's, it's just been great since then, just to find that support group and to find others that were on that journey that, that could relate to, you know, some of the things that we deal with as myeloma patients. Having to take a nap in the middle of the day.
You know, if I told my friends that they would be like, "Well, why did you need a nap in the middle of the day?" You know? But somebody with myeloma is dealing with chronic fatigue. They understand that, oh sure, it's no big deal. I take naps in the middle of the day. So it's just, you know, support like that and, and just being there to support one another, and teach one another about myeloma, and share, just shared experiences.
IMF Communications:
So how did you ultimately become a leader of the support group?
Valarie Traynham:
Yeah, so the young lady that was the support group leader, she had a relapse, and she stepped away from the group, and Nancy reached out to me and, and said, "Val, you know, I think you'd be great at this. Would you be interested in doing it?" Because I, I was very involved with the group You know, I would ask questions and bring information to the group. So she asked me about that and I was like, of course, you know? It's- It would bring me great joy. And the rest is history.
IMF Communications:
So what would you say the, the greatest value a new patient, for example, could receive by joining support group?
Valarie Traynham:
Yeah, I would say the connection, you know, that's very important. And then the education, you know, that, that is one of the, I think that is so valuable, is just getting that education. And, and we hear this all the time, knowledge is power. Well, knowledge is power, but you have to take that knowledge and do something with it. Because you can learn all you can about myeloma, but if you don't do anything with it it's not gonna benefit you as much as it would if you did something about it. And when I say do something about it, you know, get actively involved, you know, ask questions. Don't just take that information in, ask questions to see how that will affect you or how it is affecting you. Just get involved.
For me, getting involved was a way to, it just got the mind off, it got my mind off of the disease. I wasn't thinking about the myeloma so much. I was thinking about, okay, this is just myeloma. But again, it goes back to that knowledge is power. I felt power because I had some knowledge about the disease.
IMF Communications:
I also want to ask you, because this is something that is greatly affecting the myeloma community, which is the disparities in myeloma treatment in the African American community. Can I ask you, how, how do we address that disparity?
Valarie Traynham:
Yeah, I think it's really getting into the communities and bringing that awareness. When I say getting into the communities, I mean going to local community events, church, community centers, local community doctor's offices, and things of that nature. And just, it starts with awareness. You know, when you know about something, then you are going to be more actively involved in, you know, maybe let's just say a screening. Okay. If you know that you're two times more likely to have this disease, then let's get screened. You know, let's get screened for the, for the MGAs. You know, let's do what we can. But I think it has to be with awareness first.
You know, if you don't know. Like I had never heard of multiple myeloma. Had I known that it's something that I would be two times more likely to get as a person of African American descent, I would've probably been in tune a little bit more. So I think it's just awareness. We have to let people know that this disease does exist. You're two times more likely to get it, let's find out about it. You know, let's find a, find out about what are some of the symptoms. So if you're, you start feeling some of these symptoms, you know what to do, you know, you won't continue to go back and forth to the doctor. When you go to the doctor, you know the right questions to ask. And, you know, if the conversation is not going in that direction, maybe you could shift it to, to get it to go in that direction.
IMF Communications:
I suppose, what advice would you give somebody who is newly diagnosed, and, and doesn't know where to start?
Valarie Traynham:
Yeah, yeah. That is, that's a good question. So what I would say, if you are newly diagnosed, get connected with others that are on the journey. Stay off of Dr. Google. You know, if you do go to Dr. Google and you come across the IMF, go there! There, there's, I mean, it's so many valuable resources to you as a newly diagnosed patient. That's where you need to be, you know, and not just out lingering, trying to figure it out on your own. Don't do it alone. You're, you're not alone in this, and you don't have to do it alone. You know, we, we talked about it being the, you know, two times more likely to affect the African American community.
You know, as African Americans we are diagnosed at a younger age, so pay attention to that. Don't assume that because you are young, you're, you know, exempt from having a blood cancer. That's not the case at all.
I was 42 when I was diagnosed, and I think that's relatively young there, so. Don't think that you're, you know, too young for it to happen to. I also say, if you feel bad, if you have reoccurring back pain, that's not normal. I mean, you know what pain is normal and what isn't normal for you. Don't suffer in silence. You know, get out, do what you can about it. Make sure that they're hearing what you're saying when you go to the doctor and you're experiencing this pain. Be heard.
IMF Communications:
Valarie, I really want to thank you for being a part of this podcast and for sharing a little bit about your story, also sharing some amazing advice. And I am so thankful, and I know that you are continuing to share your story with the myeloma community, and it is just so valuable.
Valarie Traynham:
Awesome. Thank you. Thanks for having me, Jason.
IMF Communications:
You've listened to A Day in the Life podcast brought to you by the International Myeloma Foundation. We hope that this podcast has brought messages of hope and resilience to the myeloma community and beyond. For more information about multiple myeloma and the International Myeloma Foundation, please visit myeloma.org.
