You're listening to A Day in the Life Podcast, brought to you by the International Myeloma Foundation. We hope this podcast provides messages of hope and resilience for those in the myeloma community and beyond. Today we're talking to myeloma patient Terrence Green and his spouse and care partner Toni Green.

Transcript:

IMF Communications: 

You're listening to A Day in the Life Podcast, brought to you by the International Myeloma Foundation. We hope this podcast provides messages of hope and resilience for those in the myeloma community and beyond. Today we're talking to myeloma patient Terrence Green and his spouse and care partner Toni Green. Terrence, I'm going to start with you. When were you diagnosed with myeloma, and how old were you at that time? 

Terrence Green: 

October 2014, and I was 61 years old at that time. 

IMF Communications: 

How did you, and also Toni, how did you both individually handle the news of the diagnosis? 

Terrence Green: 

Well, for me, having had prostate cancer prior, just to hear from a doctor that you have another cancer, it's like, "Are you serious?" For me, it was just hearing the news, and then I'm the kind of person that says, "Okay, what's the next step? Just tell me what I need to do," and then just trying to get a better understanding of what this disease is, because multiple myeloma? Never heard of it. 

IMF Communications: 

Toni, did you want to chime in about what that was like for you to hear that Terrence had been diagnosed with a second cancer at that time? 

Toni Green: 

Oh, sure. I was the opposite. I was devastated, because he was just admitted to the hospital, had been in the hospital for I'd say about nine days now, and he's not getting better. He's told he has... we're told, because he's not really coherent at this point, because he's drugged up and he's extremely weak, like he's not going to make it. He was told that he had a mass on his lung, but they were unable to do a biopsy due to his condition.  

So, thank God they determined or diagnosed him with the multiple myeloma cancer. That's what saved his life, basically; something bad happened, but then they were able to locate the fact that he had multiple myeloma, because if they didn't find out that he had multiple myeloma, he would've just passed, because he was on oxygen, he was weak, he couldn't talk, he couldn't breathe, he's in pain, and we can't seem to figure out, "Why isn't he getting better?"  

Needless to say, I was shocked, and I was devastated, and I didn't know what multiple myeloma was. I was in disbelief that he had another cancer, because he had prostate cancer, and it was maybe two months before that they checked him, and it was still in remission. When Dr. [Andravine] came to provide me with the news, because at this point, when I got the news, they were literally calling code blue in his room, and it was like 20 doctors, it could have been more, in his room at this time that I'm receiving the news. I was devastated. 

IMF Communications: 

Were you both working at the time of the diagnosis, or what were the circumstances there? 

Toni Green: 

He was working and I was working. We were both working. After all of this, needless to stay, he could no longer work, because we determined that it was such a long process, and everything that we had to go through afterwards, it would just be too risky. Some people do return to work. I know that, but if you don't have to, why create the risk? 

IMF Communications: 

Right. Terrence, how was that for you, having to stop working and [coping] with dealing with your illness? 

Terrence Green: 

For me, just every time I hear Toni talk about it, I am like this person who, if I could take this on in a bubble by myself, I would. I personally don't like it affecting my loved ones because of this illness. Toni has been awesome throughout this, awesome. When it came to saying, "Okay, can't work anymore," I mean, it wasn't an easy decision, but I truly started to think about my life and longevity. As we all know, work stress, it just would not be good for me in trying to recuperate. 

IMF Communications: 

Yeah. Incredible attitude. 

Toni Green: 

He does. He always did. I have to say that. Through this whole process, I'm like, "I don't know how you do it." I couldn't do it. 

IMF Communications: 

Also, do the two of you have children, and how did you communicate this news to them? 

Toni Green: 

This was a very hard thing we had to do. First of all, we have three children. We did not tell them about the first cancer. We hid that throughout the whole treatment process, and the treatment process was intense, because it was... Let me just back up and say, people say, "Prostate cancer? Oh, it's nothing to worry about. It's the easiest cancer to cure."  

Well, I listened to that, and I felt blindsided totally, because we were told it's aggressive. If he had not gotten there when he did, nothing more could have been done. So, he had an aggressive treatment, which included us taking him to the doctor every morning for him to get, it was radiation treatment for a year, except weekends. Every day, and we had to do this without... I think it was only our doctor, his wife at the time, my sisters, and my four friends that knew. 

No one else knew what we were going through. And my office; that was it, because we did not want anything getting out to our children, because we knew it would destroy them. The youngest child was in college, senior year.  

We knew for sure that if that news got to him, he was not going to finish. That was it. He would just quit and come home to be with us. When we did have to tell them now with this multiple myeloma cancer, the oldest one that you just heard on the phone with us, at the time she was in Arizona, and the other two were home with us in Connecticut. We had the two with us in the hospital, because he's still in the hospital, and then we had the doctor that diagnosed him with the myeloma cancer and his doctor for his prostate cancer in the room with us. Then, the one that lived in Arizona, she was on the phone. 

We told them — and let me tell you, it was the hardest thing we had to do, because we've been keeping this secret from them all this time — for the first cancer. Now, there's this cancer, and we don't know what's going to happen. We don't know what it is; we just know that he may not survive it, and he's not surviving now. He's in the hospital with this pneumonia, basically dying from it, because they didn't know what more to do. Like I said, without them finding this myeloma cancer and starting this treatment, he would not be here, so it's just odd how the whole thing played out. 

We've heard similar stories, where people have been diagnosed with multiple myeloma in odd ways. They're breaking this or breaking that and going to the doctor, thinking it's this, and it turns out to be the myeloma. In this case it was the pneumonia, but it was myeloma cancer behind that pneumonia. It was very difficult. He doesn't know this, but during, I'll call it, the full disclosure with the children and them asking questions from the doctors, and at this time now, time for the kids to leave, but the two that were with us, I walked them to the elevator and they bawled their eyes out. It was like he died, and I was alone to console them and comfort them while feeling this guilt and this sadness and everything all at once. It was like a relief as well, to have them know everything up until this point. 

IMF Communications: 

When you were first diagnosed, Terrence, what was the staging like? Was it smoldering? Was it active myeloma? 

Terrence Green: 

We were told, "We need to do something. We need to do it soon." 

Toni Green: 

Now. It wasn't soon. 

Terrence Green: 

What happens then is kind of, in my brain, I had to just tell myself, "Okay, how am I going to handle this mentally?" I mean, Toni knows. With me, you can ask me a question, and unless it's frankly killing me, I'm okay. Just knowing, and just trying to understand the disease.  

At the end of the day, I had my wife and our oldest daughter Tanisha there, and they are meticulous. They are detail-oriented, and I felt like I was in good hands, so I did not worry per se about treatment, or that I was in good hands. We did our homework. We talked to two hospitals, chose Memorial Sloan Kettering. My wife said, "Look, their success rate is 84%," I believe it was. We chose to go with them, and I just basically, "Tell me where to show up and when. I'm good." That was it. 

IMF Communications: 

What was the treatment process like at that time? 

Terrence Green: 

Well, with the stem cell transplant, which is- 

Toni Green: 

Well, well, well, well, let's back up for a minute. When he was diagnosed with the multiple myeloma cancer, we were told about what had to be done. They knew he needed a stem cell transplant. They knew they had to get the numbers down to as low as possible. We knew he would be able to use his own stem cells, so we didn't have to get a donor, which was a blessing, so they started treatment immediately while he was in the hospital. Then, thereafter, he had weekly infusions with dexamethasone and... 

IMF Communications: 

VELCADE, or... 

Toni Green: 

VELCADE, yes. He had those, and then he had Zometa to help strengthen his bone. He had that treatment for about six months. It took about six months for his levels to come down to the point where he can get the stem cell transplant, and we had selected Sloan Kettering to do the stem cell transplant. Prior to his transplant, now, he's admitted to Sloan, and he is doing a stem cell harvest. That took about two days, right, hon? 

Terrence Green: 

Two, three days. Yes. 

Toni Green: 

Then, within the week, they did the stem cell transplant. I'm saying this, but it seems like it wasn't much, but it really was, because he's only aware we spoke to two hospitals, but it was more than that. I was talking to my friends. I was having them talk to their nurses, their doctors behind the scenes, talking, you know, "Who's the head of myeloma? What do they specialize in? Do they specialize in myeloma?" 

Long story short, Sloan Kettering specialized in multiple myeloma. Dr. Sergio Giralt is the head of that unit. He has a great reputation. We called. We got answers about him. We researched him. He was great. The hospital had the best rate in terms of multiple myeloma cancer survivors, so we ended up meeting with him. He was great. He was so understanding and kind and compassionate, and what got me was, he said, "I'm humbled that you selected Sloan Kettering for your husband's treatment." That was all he needed to say, after everything that we had seen and read and heard about him. That was great, and very comforting, and gave us the piece we needed to move forward now to schedule the stem cell transplant. 

Terrence Green: 

It was active, definitely active, and it was serious. 

IMF Communications: 

Are you on maintenance now, Terrence, or any sort of treatment? 

Terrence Green: 

What has happened, and by the way, you can tell how my wife Toni is. She's very precise. She has all the information. She's very knowledgeable. That's why I said to you, "Just tell me where to show up," because I know I have her and my daughter there, because they are just good like that, so I always felt like I was in good hands. I know I'd said it before, but I'm saying it again. That is what, and you can tell. Yes, what has happened is, when I got the stem cell transplant, they explained, "You can get 12 months, 18 months, 24 months afterwards." I got over three years or more, right, Toni? From the stem cell. 

Toni Green: 

From the stem, yep. 

Terrence Green: 

That was really good. What has happened is that it started coming back, so they added a different drug, a new drug, which I guess is the steroid to help the other two drugs work better. That helped me for about another 18, 24 months. Then just recently, let's say eight, nine months ago, my M spike, I started spiking up, so then they put me on new medication, which at the onset was just draining me. What they said is, "Your body has to adjust." At that time, my M spike was probably around 7. The new drug got me down to .01, so it really drove it down, and that's kind of where it's been hovering at this point. Then they backed off the drugs, so the two drugs, and forgive me; I always try to remember the names of these drugs, but one is done intravenous, and one is subq. The subq drug, which is the strongest of the two, they took me off of weekly, did it ever be two weeks, and now I'm monthly. I'm kind of stable on maintenance right now. 

IMF Communications: 

Is it DARZALEX? 

Toni Green: 

Yeah, he's on DARZALEX, KYPROLIS and dexamethasone. 

Terrence Green: 

Yeah. I call it the turkey needle. 

IMF Communications: 

How did you become in contact with the International Myeloma Foundation? 

Toni Green: 

Yeah. When he was diagnosed, while he was in the hospital, I was in the supermarket. Oh, I was getting flowers for the nurse's station. That's what it was, and a thank-you card. Someone complimented me on my flowers, and I said, "Yeah, my husband is in the hospital with multiple myeloma and I want to thank the nurses," so I was getting them flowers and a card, and she goes, "I know about multiple myeloma. A friend of mine has multiple myeloma, and they go to this support group." I was like, "Really?" You talk about angels, right? 

IMF Communications: 

Right, right. 

Toni Green: 

I'm like, "I've never heard of this." I said, "You've heard of this?" We exchanged information and she got me in touch, but I want to say it was like Washington or somewhere like that, that her friend was. I got in touch with the cancer support group there, and they put me in touch with Robin and Michael in Connecticut. That's how it came about that we got in touch with the cancer support group. 

IMF Communications: 

Now I understand you're part of a support group. What's that experience like for both of you? 

Terrence Green: 

Wow. Just Robin and Michael, her husband Michael, they've been dealing with multiple myeloma, because he's had it for over 20 years. Initially when we met, just hearing this story, when Michael was diagnosed, and how he knew or they knew that going through the treatment he was going to lose his hair, their kids were small at the time, so they had their kids shave his hair so that when they went through the treatment and came back, it was like, "We did that." It wasn't the treatment and medication, which was a really cute story. 

Then, as we continued to go to the meetings, the breadth of knowledge and information about the disease that the two of them had was totally amazing to me, because your doctors treat you. These two individuals can tell you exactly what that treatment will and will not do for you.  

I would say, during the calls and even in person, we were in person doing the meetings, that, "The two of you do not have the credentials, but every time I hear you guys talk, I feel like you guys have a PhD in multiple myeloma," because they do. They're just amazing. It's like basically just having that support group, and even if we miss a meeting, a monthly meeting, we know that the next time we get on that call they will have something to tell us, coming down the pike, new treatments, what this treatment will do or not do, and it's just amazing, really. It's just amazing. 

IMF Communications: 

M-POWER is an initiative that strives to empower people to change the course of myeloma by removing barriers to earlier diagnosis and treatment in the African American community. As you probably have heard many times, the statistic is put out there that myeloma is two times more common in people of African descent. What do you think is important for African Americans to know about multiple myeloma? 

Terrence Green: 

Well, here's the thing. I end up with prostate cancer. What do they say? "Predominant in African American males." Okay, so now I get this unheard-of disease, and Dr. Giralt is telling us that African Americans, forgive the word, [are predisposed], for whatever reason, to this disease. We're like, "What? Now there's two of them." We have very good insurance. We have all those things. I would get an annual physical every year. We take it. We eat right. We do all the right things. 

I say all that to say that in some of the African American communities they may not have the access that we have, the information access, and/or sometimes there's just a fear of going to the doctor. I am glad that they're putting some emphasis there, because along with creating this, there's a communications element, which is very helpful to put the knowledge out there, and just the foresight to think about, how do we get this information to a community which, quite frankly, we know from COVID, we're not that trusting in terms of things like that, given what has happened in the past, so I'm glad they have that. 

Toni Green: 

I was just going to also say that we've been hearing from our cancer support group, so there are nurses from, from all cancer hospitals, Dana-Farber for example, and they're all seeing African Americans are affected, impacted the most by this disease. We're looking around — there's no African... There's about 20 people in our cancer support group… 

Terrence Green: 

More than that, but go ahead. 

Toni Green: 

…in prospect at the time. I'm like, "There are no African Americans here." We went to a cancer support group closer to our town; no African Americans here. I'm like, "What are they talking about?" We finally asked Dr. Giralt, "Where are these African Americans that you were talking about that's mainly impacted by this disease?" The story is, basically they're not going to the doctors. That's the problem. 

I feel like... I said, "I think they need access to good doctors, not just any doctor, because any doctor may not be able to determine or catch this disease, and if they do, they may be catching it too late. They need good medical treatment. They need information about multiple myeloma once they're diagnosed, and they need to be provided with resources. Make sure they have the resources, and know resources is available after they've been diagnosed," because it's expensive. No doubt.  

The maintenance drugs are like a mortgage payment. This alone will make anyone be like, "I can't do this. I can't afford it." That's not how they should be thinking. They should only have to worry about taking care of themselves and getting better, and they can't do that if they have to worry about their finances, or if they don't have any finances and don't have access or isn't aware there's access to finances to help them with their treatment. 

IMF Communications: 

You sort of touched on this: What can the medical community do to improve that relationship and get the outreach and get the resources to the people who need it, who might be missing out on the information? 

Toni Green: 

Yeah. Since it's said that multiple myeloma impacts the African American community the most, then we need to do some pamphlets, brochures, put it in the doctor's office, wherever; the homeless communities, wherever they can think of to get this information known, and have it be stated on the front, "African American and multiple myeloma disease. What is it? How does it impact you? What resources are there?" They need to have all of that in a pamphlet, and in areas where the African American community gather most.  

We were on a conference call a while back through, I'm not sure if it was through the IMF as well, but we were talking about ways to educate and inform African Americans of this disease. I was thinking, even in their area, have a billboard up, "African Americans and multiple myeloma disease," and say what it is. It impacts your skeletal system, your bones, and your organs. Simple, and maybe a number or a website or something, but we need to get the information out. It's not just hidden or unknown to us; it's unknown to everyone. When you're first diagnosed, it's like, "What is this?" 

IMF Communications: 

Exactly, and there's definitely a disconnect there. 

Toni Green: 

Even at the doctors... excuse me, the chiropractors. Patients are diagnosed because they had a back injury or their back was hurting, and then later on it was disease, that it was the skeletal system part of the myeloma that caused the doctors to make that diagnosis.  

At one point, I recall in our meetings that we were given something to give to our physicians, our PCPs, give information about myeloma to our chiropractors. It's not just chiropractor and PCPs; everywhere where a brochure about medical information are placed or located, make sure that specific information is there for about multiple myeloma and the African American community. 

IMF Communications: 

I'm going to take it to a different note now and thank you for all that information and your ideas. Glad that you're active. Also, you take part in some of the meetings, and that's great. That's great to have both of you involved. I just want to wrap this up a little bit.  

As a caregiver or a care partner, whatever you prefer to be called, what would you tell a person who just learned that his or her spouse is facing a cancer diagnosis? What words of advice might you provide for them? 

Toni Green: 

I would tell them to first get a doctor that is a multiple myeloma doctor — not a prostate doctor, not a breast cancer doctor, a multiple myeloma doctor.  

Research the doctor. Research information. Hopefully, the doctor can provide resources in terms of connecting them to financial assistance. If they can't or haven't, I would like the patient to know and the caregiver to know that there's resources out there.  

They should sign on, become familiar to the IMF, because there is so much information out there in this community, and this community will help them to understand the language, the multiple myeloma language, because it's a whole different language, and you have to be able to understand that language so you can know what to do to help your patient, because he is my patient, I consider him my patient, or your loved one get better. 

If you don't understand the language, and the doctors are telling you things, you won't know. Ask a lot of questions. Research, research and a lot of questions, and don't be intimidated, because some of these doctors just feel that, because you're not a doctor, you don't understand, or you don't need to understand; you just need to listen and do what they tell you. That's not the case, and we've learned that.  

Ask questions, understand the responses, and then move on. If you don't, keep asking the questions, and they're not alone. 

One more thing: Take care of ourselves too. Take time out to do things for ourselves, because you can get burned out, and it's a lot. It's a lot of work, but I have to say, my husband does a really good job of taking care of himself now. He's very positive. I'm very fortunate that he's positive, because if he wasn't, I think it would be a different... maybe I wouldn't be able to participate in this conversation today, because I may have been maybe a different person if he wasn't so positive. 

IMF Communications: 

What kind of advice would you give to someone? You mentioned taking care of yourself is really important. How would you manage working, being a caregiver, being a parent, all those different roles that you have? 

Toni Green: 

Okay. Definitely it's important. Simple things; going to get your nails done, getting the pedicure done, going for walks, listening to music. I nap a lot when I can. I do. That's my favorite thing now, napping, and it helps a lot with de-stressing. Also, hang out with your friends. Go away for a few days if you can, and it doesn't have to be big things. Make your favorite meal. Make your favorite meals together. Eat something that you love. Buy flowers for yourself; because you're a caregiver, most of them won't be able to do it. Do what makes you happy, little things, as long as it's affordable and doable. 

IMF Communications: 

Terrence, Toni mentioned your positive mindset. How do you keep that positive mindset? What is it that you can give to someone who might be struggling to have a mindset similar to yours? 

Terrence Green: 

That if you're diagnosed, especially now, there are so many treatments that weren't in existence even a year or two ago. They just keep advancing. For me, it's part of my personality. For example, when Toni and I are together and we meet in a group, multiple myeloma, I always introduce her as the patient, and I'm the caregiver. Then I said, "No, no, no. I am." She worries so much about things. For example, when we're outside in the summer, she worries about a mosquito biting me. I say, "Well, I'm worried about the mosquito, because if it bites me and takes my blood, at night it's going to turn into a firefly, because I had this radiation." It's just a part of me. I can't help it. 

It helps me. It helps my loved ones to know that I'm okay. I'm okay. To really respond to your question, because it's part of my nature to be that way, you look for the positives. Look for the positives. I look forward to things. I don't worry about being there when it happens; I look forward to it. I'm fortunate.  

My wife has been totally amazing through this. I thank God, and the church has been awesome, and I'm an open book about multiple myeloma. I just talk about it, because it's what I live with. It is me. It's not curable. It's just me, and Toni will say, "He seems like he has more energy than I do sometimes," and that I have nine lives and all these kinds of things. I chuckle at it, because I believe that. I believe that, so it's mindset. 

IMF Communications: 

It's amazing. It's amazing. Just to wrap up, is there anything that I haven't asked you that either of you want to touch upon that you think people in the myeloma community would like to hear? 

Toni Green: 

I think so. Definitely, I feel they need to listen to their bodies. I always say this at our patient support group meeting, that they need to be honest what's going on. They need to be honest with the doctors, tell the doctors everything. Don't hide stuff, because if the doctors don't know what's wrong with them, they won't be able to treat them. For example, as I stated earlier, my husband has a tendency to self-diagnose and say, "Oh, well, I'm feeling this way because of that, or I'm feeling this way because of something else." (This part is not in the audio, got cut off). 

A few years ago, I noticed that he was tired again, almost like when he was first diagnosed with myeloma, and I'm like, "Hon, don't you see how you're breathing? Don't you? Are you okay?" 

He's like, "Oh, yeah, fine. I'm just a little tired, because I probably did too much around the house or I did too much of this." I'm like, "Hmm."  

Anyway, long story short, he ended up in the hospital because he had a massive pulmonary embolism. They could not find the fact that he had... What is it? What is it called? A blood clot. He had a blood clot, so here it is.  

What happened is, he said, "That's what happened." He said, "Oh." At church we have these dance classes for the over sixties club, so he danced like no tomorrow, doing all these dance class sessions, and it turned out that he ended up with a blood clot. When he was in the hospital, and they were going to send him home, and he's on oxygen. Can't breathe. They want to send him home with me. 

I said, "I'm not taking him home. Something is wrong. You need to find out what's wrong. I can't take him home." I was insistent, and that's what I want these caregivers and patients to understand. Sometimes you have to be persistent. He does not understand that. He doesn't like it when I'm persistent, but it's for their own good.  

Now, had I brought him home, because his cancer doctor came downstairs to the ER where he was this day, and she whispered in my ear, "Thank you for bringing him, because if you did not bring him, he would not be here tomorrow." That's how bad it was. He's thinking, "Oh, it's just a little something, because I was dancing rumba and all of this."  

No. You have to listen to your body and tell the doctors everything. If he had passed, they wouldn't have known that it was from this pulmonary embolism from the blood clot; they would've thought it was from cancer. 

IMF Communications: 

Yeah. I think just listening to both of you, just to wrap up, what I'm getting out of this is you've got to be a great advocate for yourself, you've got to practice good self-care, and do whatever you can to keep that positive mindset in the face of so much adversity.  

I admire both of you, and I'm really grateful that you took the time today to do this interview. I want to thank you for being our guests today. Your story will be an inspiration to many who are facing any kind of adversity with their health or personal lives, so thank you both so much. 

Toni Green: 

Thank you for having us. 

Terrence Green: 

You're welcome. 

Toni Green: 

Our pleasure. Anything we can do. 

IMF Communications: 

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