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    • Life With Multiple Myeloma
    • Jan 23, 2019

    Creating Your Most Valuable Plan (MVP) in Multiple Myeloma with David Winfield and Don Baylor Jr.

Being proactive about your myeloma care is essential in getting your best outcomes. The Myeloma Crowd interviewed Dave Winfield and Don Baylor Jr. to share how Don Baylor handled the highs and lows of multiple myeloma and the importance of creating your Most Valuable Plan. Learn more about this Amgen program on www.myelomaexplained.com and in our recent interview: 

Jenny: Welcome to today’s episode of Myeloma Crowd Radio, a show that connects patients with myeloma researchers and also a show that covers important myeloma topics. I’m your host, Jenny Ahlstrom.

Now, with the World Series wrapping up, we thought it might be time to take a break from the typical show and celebrate the life of a multiple myeloma patient and talk with his friend and son about important topics for all of us. Don Baylor was an American professional baseball player and manager. During his 19 seasons in Major League Baseball, he was a power hitter known for crowding the plate, and was a first baseman, left fielder and designated hitter. He played for six different American league teams – primarily the Baltimore Orioles and the California Angels, but also played for Oakland Athletics, New York Yankees, Minnesota Twins and the Boston Red Sox.

In 1979, he was an All-Star and won the AL Most Valuable Player Award. He won three Silver Slugger Awards, the Roberto Clemente Award, and was a member of the 1987 World Series champions. After his playing career, Baylor managed the expansion of the Colorado Rockies for six years and the Chicago Cubs for three seasons. He was named the NL Manager of the Year in 1995 and inducted into the Angels Hall of Fame. 

Now, I had the pleasure to meet Don in person at some myeloma educational events – Pat Killingsworth’s Myeloma Survival School in Florida. One year, my nine-year old son came with me and Don signed a baseball for him. I can’t tell you how touching that was. We’ll just always cherish that very memorable gift. We’re very sorry to have lost Don to multiple myeloma. He attended that patient educational event because he was an advocate for himself and for others. He was proactive about his own care which makes all the difference for patients.

Now, we’re very privileged today to have two amazing and special guests, David Winfield and Don Baylor Jr. joining us for today’s program to share a little more about the importance of being an MVP because you have an MVP, your Most Valuable Plan, which is an Amgen program. And we welcome the both of you to our program.

David: Thank you.

Don: It’s great to be here. Thank you.

Jenny: Thank you so much, David, for joining us. And thank you, Don, so much for being with us. Let me just give a brief introduction for you two before we get started. David Winfield is a 12-time MLB All-Star and Hall of Famer who played on six teams in his 22-year career: The San Diego Padres, New York Yankees, California Angels, Toronto Blue Jays, Minnesota Twins, and Cleveland Indians, and had the winning hit in the 1992 World Series with Blue Jays over the Atlanta Braves. David, that might be a little reminiscent about the recent Dodgers game.

David: Yes.

Jenny: We’ll let you weigh in on the World Series in a minute. But Don Baylor Jr. is the son of former MLB player and Coach Don Baylor who passed away following a 14-year battle with multiple myeloma. After his diagnosis, he worked hard to raise awareness and funds to help fight this incurable disease. Don Jr. has partnered with Amgen to build on his father’s work. Thank you so much for both joining us. It’s really wonderful to have you.

MVPDavid: It’s my pleasure. It’s very interesting to know. Each day, I continue to learn more and more about some of the advocacy and some of the things that people are doing. I think it’s wonderful with this when you have the website and this radio show to reach the myeloma crowd. I’m glad to be able to see what I can offer today.

Jenny: Oh. Well, you can offer a lot and you have already. Well, Dave, let’s start with you. Why don’t we hear a little bit about what your experience was like playing with Don and a little about your friendship?

David: Well, Don, he had a long baseball career as I did. We were fortunate enough to — before we played together, we were both player representatives for the Union. He was with the Angels and I’m with the Padres. When we’d come to meetings, I got to know him a little bit because he was already becoming a hero to many and a leader to many because he did a lot of work. He was one of the first people to move along cystic fibrosis, make awareness of that for so many others. So he had luncheons and they went all around the country. He did great work there.

Then as a player, he was exceedingly good. He was just one of these big strapping players that there are a lot of people afraid of a baseball, but he’d stand right there at 95 mile an hour fastball taking the hit and just walked down to the base like it never hit him. He was that solid kind of player. Then we played together in New York for a couple of years and we just became closer because of his leadership ability, the way people respected him. He ended up being a groomsman in my wedding. He and his wife, we were just all close.

As time passes, when our careers came to an end and he was diagnosed with the disease, multiple myeloma, I didn’t know much about it then. I didn’t know it was an incurable blood disease. You’d figured he might come out on the other side, but he was around a long time. He didn’t complain about his situation. I found out a little later on that because he was so organized and thoughtful and did a lot of planning and worked with his physician, oncologist and such, that he was able to extend his time with us. I mean I learned a lot more about the disease almost after the fact. But that’s why I’m glad to be some type of advocate, help carry on his legacy and educate many more people about this disease.

Jenny: What did you think when you saw him being an advocate? It looks a bit like he just had an advocate personality and wanted to help and give back. It sounds like that was just part of who he was.

David: It was. Don Jr. would probably speak maybe something to his upbringing or his life. But he was confident in himself in the things that he did, but he always had time to do for others. I respected that and appreciated it. I had my own foundation and worked with kids with education, health and things of this nature. And so, there was a natural coming together for us.

Jenny: Well, it’s amazing when people like you take the time to give back. We really appreciate it as patients and people who were trying to advocate for these types of diseases and for other programs. Is there anything else that you learned by watching Don go through this experience about — because 14 years with multiple myeloma, it’s actually quite a long time. Is there anything that you think that he did that was unique to help him live as long as he did?

David: Well, if this one is still for me, one of the things that I didn’t know is that it was recurring. You could have relapsed as you go into remission because there are times I would see him and he’s just as big and bold and strong as other times. And then there was a time, you know, it affected his bones and Don Jr. could probably speak to that. But either you didn’t always see it on his face or his actions. It’s interesting as I talk about it, it’s kind of tough. It just brings things back to light and back to reality for me.

All I could say, Don, he was much loved. I’m hearing that he took care of himself. He had his plans. He saw his physician regularly, had discussions. Right now, working with Amgen in an advocacy capacity, I appreciate how they put it together for myeloma. There’s a website. You can go to myelomaexplained.com and you could really look at all your treatment options and a lot of helpful resources. These are the kind of things that we can pass onto those who are listening and their families as well. So to help other people manage their particular situation.

Jenny: Yes, for sure. That’s something we really needed to talk about. Well, Don, what was your experience growing up with him and as your father? That’s a big open question.

MVPDon: Yes, thank you for the opportunity. Thank you for that question. I think many of the things that Dave spoke to, you know, I saw firsthand as a son. Accountability, integrity, leadership, leading by example, do unto others — a lot of those real basic human decency things that oftentimes get lost when people look at how far someone could hit a baseball. But at the end of the day, he was always talking about the values that got instilled in him as a kid growing up in a segregated community in Austin.

And so, he carried those family values with him the first time he ever left the state of Texas when he went to Bluefield West Virginia to go to A-ball. That really started, in essence, almost a 50-year love affair with the game of baseball in terms of professional baseball. And so, from the time I was two weeks old, we were a baseball family and that really kind of defined who we are, but I think a lot of the lessons that baseball teaches you particularly in terms of not getting too high, not getting too low can carry you through life but also carry you, be very helpful in terms of managing such a tough disease as multiple myeloma.

Jenny: Myeloma is like a marathon. It sounds kind of like a long career in baseball where sometimes things are great and sometimes things aren’t. What was his commitment to the game after he was diagnosed?

Don: It wasn’t even like a question in terms of whether or not he was going to continue. At that time, he was a bench coach for the New York Mets. And so, obviously being in New York City, you have access to some of the best medicine in the world. At that point, it was just how do we do treatments and still get to the ballpark? How do we do treatments and still make the road trips? It was, how do we make this work as opposed to if we’re going to make this work.

Jenny: What I noticed about him is that even though his love of baseball and his career continued, he used his time also to really reach out to other myeloma patients.

Don: Like I said, that’s who he was. As Dave mentioned, he really kind of cut his teeth with the cystic fibrosis work really in the late 1970s. I think when he started, the life expectancy was around the same age as I was. He really empathized I think or sympathized with six, seven, eight-year olds not being able to breathe, not being able to really do basic functions.

And so, certainly, he was always one of those people that lived those principles before the term “pay it forward” came along, I learned about pay it forward because he was always talking about those giants of the game that came before him like, obviously, Jackie Robinson and Frank Robinson but also people like Curt Flood and Monte Irvin and folks like that. So he was always thinking about how the path was blazed before him but also how he could continue in that tradition.

Jenny: Amazing. As a family, there’s a lot that patients go through. What Dave was saying earlier is really true. Sometimes, you look at myeloma patient, and they look totally fine. Sometimes, patients will hear, “Well, you don’t have cancer because you look fine.” As a family, you see the insides. You see the days when you’re not feeling well or the days you’re on treatment or whatever. So what takeaways did you as a son and as a family have about his experience with myeloma?

Don: I think one of the things that is important is that we come from a very large extended family. Our family has seven or eight generations within a 50-mile radius. And so, health struggles is something that he’s dealt with since he was probably five in terms of his extended family. I think it was something that our extended family was accustomed to. It’s really kind of a faith and family bond that really just kind of carries you. His mom died of cancer when he was 40. And so, it’s just something that I think that — especially for Southern African American families, there are all kinds of health issues that that go back generations. And so, I think it’s just very much kind of along the same lines of kind of how we were raised as a family.

Jenny: Being together and supporting one another. It’s amazing. One of the most important things.

Don: I do think it did for us also bring up the importance of having access to good medical care. The Major League Baseball Players Association and the benefits that occur from that, it was a matter of where we were going to get the best doctors and not if. And so, I think knowing that some of our other family members, extended family members and broad extended family members don’t have obviously that privilege or that luxury. And so, I think that that was also something that became pretty apparent to a lot of this as well.

Jenny: Well, there are two key points I think we need to make. One is what you just mentioned, the importance of seeing a myeloma specialist – somebody who specializes in this disease is absolutely critical. Seeking that out to making sure you have a specialist on your team is probably one of the best things you can do for yourself. This is particularly important I think in the African-American community. I don’t know if everyone is aware of this, but multiple myeloma affects the African-American community two to three times more than the white community. It’s also interesting that typically the genetics of the disease are lower risks than Caucasians. African-Americans should be living the longest with myeloma. Anything that we can do to encourage everybody to get a consult with a specialist is really, really important.

The second thing is this Myeloma MVP program and idea. Because having a set plan with your doctor is absolutely critical. Why don’t you both share a little bit about why you’re passionate about working with Amgen on this initiative and what does it mean?

David: Well, you’re asking what does it mean? In life, if you could make a difference, then do it. I have been I guess in that celebrity category for a long time. I played baseball many, many years and I was fortunate to do well and people know who I am. More times than often, they might listen to something that I say. So when I try to speak, I try to speak on something important or significant or help make a difference. I’ve been able to do that with that celebrity voice and face. Only a few times, if I connected with groups or organizations that really are about to have a real purpose, and you can express a strong message on different platforms.

As I’m talking to you now, actually I’m looking at the website, the Myeloma MVP website called Myeloma Explained where we’re talking about creating your Most Valuable Plan. I have to say, there are so many things on it that when I first started, I didn’t know about it or I didn’t think about it. But as Don was saying, you have to have a good physician or oncologist. But if you have a lot of questions and information that you can share with your oncologist, together, you can develop a plan. You get your appointments correct. You get your medication. What are your goals, your direction, your whole thought process? You’re actively involved in your present and your future. Just doing things like this, taking these steps, that’s part of extending one’s life and quality of life with their family.

When I speak, I’m speaking from the heart on this and I’m just glad that we’re reaching a lot of people. It’s only been this year that we started working together on this. Don and I got together during the baseball All-Star Game, or was it Washington, DC? We did a number of interviews and then in New York, some national interviews. I’m just very happy that I can use my celebrity, my voice, my reach just to tell many, many more people about this. I’m going to think even as we’re talking on this interview, I’m going to be finding ways to reach more of the African-American community as well because I didn’t know about that the African-American community – we’re stricken with the disease, maybe two or three times more than other communities. I know for sure that they don’t know enough about their treatment options, where to go, who to speak to and I’m going to do my best to reach them as well.

Jenny: Absolutely. Don, what would your message be for patients and caregivers dealing with myeloma?

Don: Well, I think going back to our personal experience, I think you know the fact that my dad was able to really work and not just work but work and travel extensively for 12 years, wearing a baseball uniform was certainly an inspiration to me. And so I hope that can be inspiration to others. Certainly, I think that this spirit of being proactive, being aggressive, trying to kind of stay on top or even some cases stay ahead of, what the disease may be trying to do to your body is certainly something that at least I saw that was helpful in helping to manage this really tough disease. I think that there’s no two ways around it in terms of how difficult it is both on your body and obviously on your mind. But it is it is important to understand that having a plan, working with your caregiver and your doctors can really make a difference. That’s really kind of the message that we’d like to get across to people.

Jenny: I think that’s an amazing message and one that’s very well much needed. Because a lot of what you both are saying is how do you become your own best advocate in this disease? It’s easy to just say, well, I don’t feel well. And so, I want somebody to take over and I wish that would give us great outcomes. But I think in myeloma, you have to be much more proactive. You need to know what kind of myeloma you have because not all myeloma is the same. You need to know what type of treatment options you have and you need to be discussing those with your doctor. Dave, your idea to write down your questions and take them to your doctor is really, really important and other things that you can do like that.

David: As we talk about it, just historically, many communities don’t really talk about an illness or disease. They don’t. They just haven’t. It’s just been private and I’ve seen it with other good friends and families. Even recently, a very good friend just passed away from another disease, and he didn’t even share it with his family. Most of them didn’t know that he was even sick, and then they’re caught really off guard. I think this is a very proactive, intelligent up-to-date way of you just have to — we have to break that mode of silence and keeping it to ourselves. Not only will it hurt the individual with the disease, but it hurts your family as well. We just have to break that cycle. I think some of the things that we’re doing here with this Myeloma MVP campaign can help people do that.

Don: I also like to add, we really appreciate the terminology of the word crowd. It really I think has a real good positive connotation to it in terms of — it’s not just a network, but it’s a group of people that have strengths, that have voice, that can have voice. The idea is to make that voice be heard. We really appreciate the way that the campaign is organized to really lift up this voice.

Jenny: What you’re saying about it being this group effort or family approach, it’s really important because in multiple myeloma, research is happening so quickly. We have a lot of companies including Amgen that has a very big myeloma pipeline. They’re doing a lot of drug development for the disease as others are. The doctors, the local doctors, because really only 20% of myeloma patients are being seen by myeloma specialists.

That means 80% of us are being seen in the general oncology setting, which means you do need to be more proactive. You do need to make sure that your doctor is using the very latest therapies that are available that have been approved and are not only that, but maybe consider clinical trials. I don’t think that’s something you can do on your own very easily. It does need other people around you saying, hey, we might want to consider this or should we go here and fill out this document and take you to the doctor? Those types of efforts are just absolutely essential.

David: I hear you.

Jenny: Yes, completely. Well, we haven’t allowed you to weigh in on the World Series yet.

David: It takes a secondary position to what we’re talking about. It truly does, but I did happen to — I still work with the Players Association. I kind of balance between who I root for. I just root for the guys to be well, play as well as they can, and let the best team win. Boston was the best team. I was at the last three games. The people in LA two years in a row, they lost in World Series. They’re kind of blue and not Dodger blue, but they’re just kind of down right now. But they have nothing to be ashamed about because they were a great team, great organization, but Boston was by far the better team this year. So if any of the Myeloma Crowd is from the East Coast, this is a very outstanding exceptional team, good people. Happy for them.

Jenny: Don, do you have any comments?

Don: No. I’ll echo some of those things. I think two things kind of stood out for me. One was how we were talking strategy during this World Series. A lot of it was about pitching changes, but it was refreshing to really kind of have good, honest disagreements about strategy. The second thing I thought that was important related to Boston winning is just how important outfield defense is. We saw that from the Dodgers and Cody Bellinger, but also just from the Red Sox, the whole series. And so, I think it was refreshing that it just wasn’t them putting the wood on the ball but them taking outs away not just during the World Series but throughout the whole playoffs.

David: I’m going to add to this since you really got into it. For those who don’t know, Don Baylor was — how many teams did he end up going to, Don, where they called him rent-a-leader? Because he represented confidence and strength and experience. I think he added that to Boston. He started that with the Angels and in Baltimore. But he brought that to the Minnesota Twins. He brought that to the Yankees. And so, your dad was part of the Boston situation for a moment. But one other thing I’ll say in strategy, so many people talk about analytical approach to the game of baseball and they don’t care if you make an out on a strikeout. They just think it’s an out.

But Don Jr., you know you can’t strike out 12, 14 times a game. Never create any — how do you say, where you have the opposition on their heels? They’re just cruising along and the Dodgers never really put the heat or the pressure on Boston. It was like two strikeouts, an inning, a pop fly, and there was never any connected action. I think they should revisit the strategy somewhat on the analytical approach lefty facing righty and we don’t care if you strike out. It’s just an out. That’s not good. But we’ll see. They’ll make their own decisions. They’re still a capable professional organization and I enjoy going to their ballpark.

Jenny: That’s so fun. When you think about strategy, I think sometimes what you were saying about this comprehensive strategy is really critical for multiple myeloma patients because it’s not just showing up at your appointment. It’s doing things like taking a look at this myelomaexplained.com website and looking at the Myeloma MVP program. Is there anything else you’d like to share about the program and let people know where they can go for more information?

David: Well, you can go to the website www.myelomaexplained.com. It’s very straightforward. You can go down and download your Most Valuable Plan where there’s a form where you can fill out before and following your doctor’s appointment so that you can create your own Most Valuable Plan. It has a calendar, a time for appointments, on and on. It’s got frequently asked questions. A number of things that you say, oh, I wouldn’t have thought about that. It will just help you as it says, learn, understand, create and explore like even helpful resources, like talking to you today is a very helpful resource for those who didn’t know about myelomacrowd.org.

Anyway, there’s just a lot of things. It’s a great — again, I’m going to say online, here we are talking. I’m just going to thank Amgen. I’m going to thank you guys for just giving me the chance to be able to speak on something for — and especially with my — Don again was a dear friend of mine, loved him to death. He’s just a great human being. He left us too soon. But if this is just by speaking on this is some kind of — we can keep his legacy alive and make a difference in the lives of so many others. I’m all for it.

Jenny: That’s wonderful. Well, we really appreciate you joining us today to share this program. We’re so appreciative that you are advocates. We thank you for being really giants in the game of life for us and for people who have these rare terminal diseases. Thank you so much.

David: Thank you. Keep up the good work.

Don: Thank you.

Jenny: We really want to thank our listeners for listening to Myeloma Crowd Radio and invite you to tune in next time to learn more about the latest in myeloma and what it means for you.

 

About Author

Jenny A

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

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