In this episode of “A Day in the Life” podcast, Robert Pugh, a retired businessman, pastor, and father of four grown children, shares his story. In 2014, Robert was preparing to run in a 15k race. Even though he had no symptoms, a routine physical examination revealed a decline in his white blood cells and he was diagnosed with multiple myeloma. Robert worked with Levine Cancer Institute’s Dr. Saad Usmani—a fellow runner—to fight the cancer. Today, he counsels other myeloma patients in his trademark fashion: “I keep the message simple and deliver it with love.” Robert advocates taking personal responsibility for your own health. He clearly practices what he preaches. In 2020, Robert successfully completed a 15K. Listen now to the full interview. 

 

Host: You’re listening to “A Day in the Life” podcast brought to you by the International Myeloma Foundation. Today we’re talking to Robert Pugh. Robert is a resident of Charlotte, North Carolina. Robert is a resident of Charlotte, North Carolina. He is retired businessman, pastor, and a father of four grown children. He is also a myeloma patient who helps other patients self-advocate for their care. We invited him on today to learn how he remains positive when facing challenges. To begin, I understand, Robert, you were diagnosed with myeloma in 2014? Can you recall for us how you reacted to the diagnosis at that time? 

Robert Pugh: When I went into the office, he mentioned myeloma. Of course, I had no idea what it was. And I was somewhat not shocked, but I was very curious about what was next. And when I pulled up, … when I went to my particular doctor, he saw a rise in my calcium, he had me take some tests. And then he said go and see this particular doctor. That was the oncologist. When I arrived at that location, and I saw on the building what it said – cancer and blood – I had a tear that came to my eye. And it was something that I say, “Often the heart knows what the lips dare not utter.” And somehow I knew there was information in there that had to do with this. And so when he mentioned it to me, I didn’t try to find out where it came from, I needed to know where I was. Okay, what are you saying to me? And what’s next? I told him that I was a runner and that I was preparing for a race in the next month of two. And of course, he asked me, “Wow you are in pretty good shape?” 

And I said, “Tell me about the race.” 

And he said, “Well, you can still run it if you want. It is very slow-growing cancer and so you can run it.” 

Host: When you were first diagnosed, was it smoldering or, was the diagnosis, or was it active disease? 

Robert: It was active .Because at the time they were not using that terminology. Is it MGUS or is it smoldering? It’s there, but it’s not here. They weren’t there. You either have it. And he gave me a number. He said, “Almost thirty percent of your blood has been impacted by this.” 

For me that sounds high. To him, it did not. I said, “Okay, I need time. I need just a moment to digest this. I took a couple of weeks . . . to digest, to consider. Not to make statements about what I’m going to do, not do. But just let it air out. And I needed to listen to what was being said next. What I heard in my own heart. That surprised me. 

Host: And after you were diagnosed, what treatment regimens did you undergo or are you on today? 

Robert: They recommended the… it was called the Revlimid, Velcade, and dexamethasone, which is an induction therapy, and this is the first-line. Very often people only get two, maybe the Revlimid and the dex. Uh, or the Velcade and the dex. But I had a three-step, which is Revlimid, Velcade, and dexamethasone. And those were all chemotherapies, after which, that was the uh, I did five regimens, which are 28-day cycles—five of those. Then I did a stem cell transplant. 

Host: So how have you, how have you fared since the transplant, have you had to continue maintenance therapy, therapy, or are you in a remission, or how are things going? 

Robert: I take a maintenance—a low-level maintenance. And that’s the extent of anything I do medically.  

And I go in every month for my labs. So, I do the maintenance. I did not achieve that 100% zero number, when I had the stem cell transplant. But I didn’t need perfection to go forward. 

Host: And as you mentioned, when you talked about your diagnosis, you were training for a 15K. um, I understand you ended up, —completing that 15K eventually. What did it take to do so? 

Robert: 15K is very difficult race. It’s 9.3 miles. I had run it 18 years, and uh, these types of races are my personal power. You know, I assume, everyone has something in their life that they use to motivate themselves. For me, it has been this 15K. To maintain some sort of physical strength throughout my life and to be able to put that strength to work. It’s hard on your bones, as you get older. I was in shape for it, so I wasn’t concerned. It’s hard on the bones. That’s why I began to read information about myeloma. And not knowing yet, how far I was in, what damage it had done. It would damage bones. And my idea, I did not want to run and come down the hill, and the bones can’t take it. Now were strong enough, but these were cautions. When he told me that I needed to, that I could run a race, I had an immediate shift in priorities. The race was not as important anymore compared to this danger that he had talked to me about, that had entered my life. Race versus cancer: Can we start treatment? You know, I’ll run the race at another time.  

That’s what happened. We began to treat it. And I began to, of course, absorb what this treatment was going to do and so for the next year, the very next year, I wanted to run. Couldn’t do it. The following year, I went down, and I did was a 5K. For me that is a warm-up. And that was tough. Because I had been off for almost a year and a half. Then my weight fluctuated. I’ve never been high in weight, so my weight was high. I said I can’t run 10 miles, you know, with this kind of weight. It turned out I said, I have to. I cannot continue to wait for perfection before I run this race. So I ran it last year, and I completed the race. And, oh my, all the lights came on. You know, I was moving back into an area where I could depend on myself physically to do anything I want to do. My anything has kind of come down. 

But I have run that race. It took a lot of courage. I drove by myself to Florida from North Carolina, which was six hours .I took on a run. And I took on a drive. And you know they were afraid so I tried not to tell them too much.  And I went down and I ran, and it was. It was a real challenge to help get me beyond the mindset that you are injured, and you cannot do certain things, which is so important to me. 

Host: When you talk about mindset, I understand before you retired, you worked as a medical device manufacturing – in business with that. And you were also a pastor. How would you say your work as a pastor has informed your experience of living with myeloma? 

Robert: My goodness. There is a certain humility from that spiritual perspective when you look at the awe-ness, the bigness, of what’s created. Human beings in this world we live in, it’s huge. And so, I tend not to take events and make them bigger than the moment. That begins to help me, and I have time to be reminded of what this body is, that was made, that we have, and how it’s been able to endure, and respond and recover. And so here we are… 

When I found out, I – you know, you have this choice – are you going to start praying for healing and take this away God, and you know. And those types of things came to my heart, but I couldn’t find any peace in asking for healing. Isn’t that something?  

And so, I never to this point have prayed and asked God to heal me. But what I was I asked for endurance because I want to see what this is. There are some things you can only learn by experience. I want to know about this so when I asked God to give me strength, it was strength to endure so that I can learn. And I can see what it is that I can contribute. What I was afraid of, what this was going to do. You know, the doctors do what they do. I’ll do what I’ll do. But there’s more to this. And I want to see. You know, and that’s how I went in. 

I committed to the hospital, “Look, this is what you’re going to do. I’m going to do everything you say. And I’m going to find out what I need to do. And I’m going to master my role. But I’m going to learn. And I began to learn.”  

As a pastor, I’m a lifelong learner, and I love and honor people. And I look at where they are. And how do you help people in this situation. I went into the situation to see. And I was able to learn, and I was able to recognize, you know, how in fact I can help them, without saying ‘God bless you.’ But how to really speak to where they were because I was familiar with it. And wow, that’s priceless. It’s part of what I do now, because it’s so much love involved. It’s real. You’re not dealing with toys. People don’t hide when you talk to them about this. You don’t have to convince them about anything. And so you are dealing with more truth. It appears. If they allow.  

And that’s the thing. When they open their heart and talk to me, the doctor has already given the information they’re going to have to study for two years. So I’m looking in their eyes and I can see where they are.  

If I may so, there was a gentleman in the lobby, him and a young lady. And they were both close to, in their mid-sixties. And I was speaking to him and he was coming out, and I was talking to he and his wife, I could just feel something between them. 

And I said, “Is that your wife, sir?” 

He said, “Yeah.” 

I said, “Look at her. She looks like she’s been in love with you since you were five years old. I said which one of you are the patient?”  

He said, “I am.” 

I said, “Well, she’s taking such good care of you.” He looked over at her, and he began to cry. And that’s where they are. They are more into their human, spiritual place than they are in the head. And so, I look to their heart. And I begin to speak to their heart. I’m an ex-minister. And it’s easy, if I don’t go in there like I know stuff. Because I don’t. It’s so different with each one of us. You care, and they know you care. And so I really get to engage humanity on a different level, and this is . . . It’s…What can be better than serving the children of … 

Host: And that’s what I understand, since your diagnosis, you’ve been an advocate for other patients, helping them to find the best access to care. And with that in mind, and you kind of already touched on this, with the couple that you just mentioned, what would you say to a newly diagnosed myeloma patient who may be feeling overwhelmed? 

Robert: That’s the thing. They usually ask for what they want. I mean, for me, with new patients, when I walk into the room, there’s a message. Because, just like myself, we have never seen anyone that had myeloma. And it sounds like it’s a doomsday. And so, when they see someone, myself, that opens the door. And they say, “You have myeloma.” 

I say, “Yes, ma’am, I sure do. And here’s what has occurred.” 

And then I can ask questions. Because once they relate and see that we’re in the same place, some of their fear goes down because suddenly they realize I am alive and I’m smiling. And I usually have on a suit, for that reason, to impress them. That’s is my objective. Not impress them in a fronted way, but in way where they see normality is in your future. You know, that you will get strong. And often times, the overwhelm is from a lack of information, a lack of security. They don’t feel secure with the information that they have, and so I go to them in their strength. Whatever their strength is. Their belief. Where they may be. And some of them have stories: “Oh, my uncle, he had a problem, and I might have it too.” 

“Yeah, you might. And you might not. So which one are you going to prepare for?” 

So I go right into, “Here’s where we are. Yes, the tears are real. It’s okay.” I don’t go into the pre prescribed you know, set-up, I’m going to say this, but I teach a class with maybe 8 in there. I’ll sit in there before it’s my time. And they think I was one of the doctors or something. And again when I stand up, I recognize certain people and where they are. And what we need to do. 

The information that they want is elementary, and I speak elementary language. You know, they just want to know, “Why is it I can’t sleep?” And, “What is this level pain?” 

And so it’s just day-to-day. And so I help them separate what the doctors are going to do versus what they need to do. That’s how I approach them. I approach them right where they are and give them something.  

Host: Speaking of information, the IMF, part of our mission is empowering patients, providing them knowledge about the disease and the latest treatments available. When did you come in contact with the International Myeloma Foundation? 

Robert: It was during this induction phase. That first four or five months. Again, the cancer center that I am in, they are extremely good at educating, at offering the patient information, even if a lot of people don’t take advantage of it. And in those sessions they usually have a table with many of the books from the International Myeloma Foundation. And I began to get those books, on Understanding Your Test Results, or Clinical Trials, or What Is Multiple Myeloma? Just all the little details. And so, I came in contact by reading so much of their material. Then I had the opportunity to really to begin to explore their website.  

But it started with the books: they were the foundation for my basic information. They were in support of many of the conferences that were in this area—both the small ones and one that came each year. I went to each one of them. They were mentioned very often by the medical training staff.  

You know, “Have you read this one, Robert?” 

I found them an invaluable source, because we were also, at the time, we were discouraging other patients from going on the internet and just reading things because there was so much errors that was being pushed. So to find something that we could all trust and get this is it, it was really helpful. 

Host: And you are a Charlotte resident, so you may be familiar with what the IMF has begun there, which is the M-Power Initiative. M-Power is dedicated to removing barriers to care for the African American community and improving outcomes in the disease. In your experience, what would you say are some of the barriers to access to care for African-American myeloma patients?  

Robert: I looked over that. And your question said, “What were some of the barriers healthcare access for the African-Americans…My first response is lack of access to healthcare.  

That may be anything from transportation to there not being quality services any quality services in their area, whether they are in rural area or in a smaller area. So that access to care has been a big hindrance as well as resources. They generally don’t have the insurance or the background to the insurance to pay for the care. That is something also.  

The mistrust is a hindrance. Oh, my goodness. And say that because it’s something that because there’s got to be a better way to educate and get beyond that block. And it’s the mistrust of the medical system based on historical trauma. It’s real. It’s there. It’s stuck in the hearts of many African Americans when it comes to a real serious thing like this. The more serious it appears, the more we back away. That’s got to be approached. I haven’t dealt with it yet. 

There was a lack of knowledge around what’s needed. You know, where do you need to go? Your oncologist. Your specialist. You know we listen sometimes, “Wait a minute. Where are you getting treatment?” 

They will say to them. You know you have a specialist. And sometimes, you know being here in Charlotte. And then you’ve got the cancer center in the city, we assume that specialist. And when I saw the numbers, no not all. There are so many being treated without a specialist. That becomes also a hindrance to good care.  

So yeah, education process: education, insurance, and access. Those are three things that I recognize in talking to some patients. There’s for example, there’s financial assistance for medication. There’s financial assistance that was so generous, that I was just so surprised and so grateful to know, that there were so many organizations that were helping people. 

But yet, the people, the African Americans don’t know. They don’t have the information. And they will qualify as much as anyone else because it is not income-guided. Not to the point the majority would be impacted…. So, this information and education is being addressed. 

The M-Power, I’ve had conversations, the directive here in Charlotte, and they are getting geared up to do some work. I intend to work with...

Host: That’s great. Your insights—so far, just listening to you—have a great impact on the community and the myeloma community as a whole. Also, with the IMF are you involved in any support groups, or, and what is that relationship like for you? 

Robert: Yes, it was something that I think right after the stem cell transplant, I began going to a support group here. For two years, I went. Maybe two years.  It was what I needed. It’s not so much the information, but just sitting in the room with individuals who are going through the same thing, and it’s an opportunity to listen, and to discuss. Sometimes, you find out, “Wow, I’m doing real good,” because they’ll tell you about some of the challenges they had. 

This myeloma affects everyone so differently. Some come in, and they look really difficult. Others come in, and they look really great. Or for that day. But the support group, and the gathering, the IMF also has a finger in that. They make sure your reading materials are there. We had different type of speakers that would come in from organizations. But I find that the support groups are very helpful. You are in a land that you never even dreamed about. It helped. I said I did two years because at that point, that’s all I need. You know, I appreciate it. I’ll go back. But I began to start working. And they stay on the level, and they stay on the level of maybe the first year or two. And that’s where they need to be. They are in the right place.  

But I talked to the doctors. The doctors at times put together groups that cover four to eight years. Those people are living on. Their challenges are different now. They got to deal with toxicity now after you’ve been taking that medicine for four or five years. So, we’re looking into that too, Okay, how do we educate and keep up with the second tier, instead of just saying, “You’re doing real well.”  

“Yeah, but there’s challenges.” 

“You’re taking that medication. You better keep up.” 

Host: Just to wrap up, is there anything else you want to share with listeners about your experience as living with myeloma or just living well in general, um, on a day-to-day basis? 

Robert: Yes, for myself, I did not have a caretaker for a long time so I’m wearing two hats. You know, and I had to keep up with my patience. So learning cooking, making sure the whole, you know, I live that way, but now, I have to cook a different type of food. My cleaning is concentrated a little more heavily. My walking – my point is myeloma patients really have to take responsibility for their diet, their exercise, and their communication. You know, this is not intended for you hurt or suffer. And sometimes we suffer in silence, thinking, “Oh this is cancer, you’re supposed to suffer.” 

No, we got some good things going on. And if something is uncomfortable, you must tell your doctor. And being on the internet is nice. Has anyone ever had this problem? Please don’t do that. Call your doctor, your nurses, and ask. And say, I’m having this issue. And they’ll tell you, “Listen. That’s common. Here’s what we want you to do.”  And you find out you don’t have to go through the difficult phases. 

The quality of life is much better when you are communicating and trusting that medical team. They see the emotion of it already. I would encourage the patients. You don’t have to become a super athlete. But during the course of a weeks, walk a few days. And put the sugar away a few days. And just take good care of yourself, and I tell you the advancements that are made gives you that quality of life. If you support it and do your part, your children, your spouse, your family, they’ll be alright. 

And while I’m speaking of that, if they are new, for a year, try not to entertain everyone. You know, if you are just coming out of stem cell, don’t entertain anyone. Just people, I need a moment. You know take seriously what’s told. If they say, put the mask on. Put the mask on. Your immune system can’t handle the kind of bacteria that nine children will bring into a room. And so pay attention and be a do-er, not just a healer. 

I was speaking to a nurse, and she was telling all the things a patient was telling her. And a thing I found out, myeloma does not make you smart. You know, it does a lot of things. We don’t grow an intellect because of a disease. So, we have to trust. Don’t argue with the doctors. Trust them. If you don’t what they are saying, ask them twice. If you got real bad sense, then there’s other decisions. But I think there is so much – what do you call it – positive expectation and patients are living well and taking responsibility, we have a rise in our sense of hope. I just hope that we continue. We just have to get to them for them to know that.  

Host: Thank you, Robert, for your time today. I think just by your example and your, and how you live each day, and how you help others, is a good example for everybody in the myeloma community and an inspiration in itself. So, thanks again for your time. 

You’ve been listening to “A Day in the Life” podcast brought to you by the International Myeloma Foundation. To learn more about myeloma and the IMF, visit us at myeloma.org.