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 are talking to Thomas Goode, who was diagnosed with myeloma in 2005, at the young age of 34. Thomas shares his in-depth story of diagnosis, treatments, and multiple relapses in the audio podcast, Myeloma Voices, also brought to you by the International Myeloma Foundation. 

Transcript:

IMF Communications:
Thomas, I listened to the Myeloma Voices podcast, and I encourage anyone who really wants to hear the story of someone who continues to fight in the face of what all this disease can throw at a patient, to listen to your episode of Myeloma Voices. 

Today though, I want to focus on the life-shifting moments in your myeloma journey. To begin, can you tell me if you can recall what your life was like before you ever heard of myeloma, before diagnosis?

Thomas Goode:
First of all, I would like to say thank you for having me. Prior to myeloma, I was a very active young man. I was on softball teams and basketball teams and pick-up basketball, all kinds of sports. Also, I was working at a federal prison, so I had to maintain my physical fitness to be a part of that community. If I had an altercation to respond to, I wanted to make sure I was fit enough and active enough to get there, being able to work once I got there as well. So prior to myeloma, I was very active and I mean, I had never heard of it, so you could imagine how it was such a shocker when I was diagnosed.

IMF Communications:
Obviously, yes, and you had never heard of the disease ever.

Thomas Goode:
Never.

IMF Communications:
Like you said, you're really into fitness and I listened to your Myeloma Voices interview. It seems like you always instinctually knew how to advocate for yourself, even from the time of your diagnosis. When you were first diagnosed, you had bursitis in your shoulder. So you went to your family physician and you knew instinctually that this had to be something more than just bursitis. What made you advocate for yourself at that time?

Thomas Goode:
Being an athlete, self-proclaimed, I could tell a difference between workout pain and the pain that I was experiencing. So when he said that I had bursitis in my left shoulder, I didn't accept that diagnosis, especially since I'm right hand dominant. I had had medical surgeries on my knees at this orthopedic specialist and I went back to him because I knew what he was going to do, which was an x-ray and an MRI to get to the bottom of [where] my pain was coming from.

IMF Communications:
That's interesting, because a lot of myeloma patients take a long time [for them] to be diagnosed because how would you know that this pain is related to this illness? When you were first diagnosed, they said it was a plasmacytoma in your shoulder, correct?

Thomas Goode:
Yes.

IMF Communications:
Did the doctor explain to you at the time this is multiple myeloma, what plasmacytoma means?

Thomas Goode:
Well, that orthopedic specialist, he's the one that diagnosed me, and he explained it to me as a cancer of the plasma cells that's isolated in one area. After that, he introduced me to an oncologist and they said, "Hey, don't go to the internet because internet will give you bad information." I didn't listen to them. I went to the internet, and I did read back what a plasmacytoma was, and they said that if it comes back, it can be an aggressive form of multiple myeloma, if it comes back in multiple areas. So, when I did go to the oncologist that he requested and I questioned more about a plasmacytoma, he told me the exact same thing as well, that it can come back as multiple myeloma.

IMF Communications:
Then, after that, you started experiencing pain in your spine, I think at T12 L1 vertebrae. And so, you underwent, at the age of 35, an autologous stem cell transplant. By this time they knew you had myeloma, and then just two months after that transplant, which is a very grueling procedure, when you learned you relapsed, how did you cope with learning that so quickly after having gone through that procedure?

Thomas Goode:
It was a shocker because being that it was found [in the] lab work, I felt really good. I felt I was getting my strength back to become the person that I was or what I like to call my new normal. I was trying to find my new normal. I knew that I wasn't going to be the person that I was prior to myeloma, but I wanted to get to a better place, and I felt that I was on my way there in those two months because I was monitoring my counts. I noticed all of my counts were within range, and then when I get the news that I had this relapse, it was hardening. I was heartbroken from it.

IMF Communications:
That's really tough, and then I understand soon after that, the doctors pushed for an allogeneic stem cell transplant, which for listeners that's when a donor donates stem cells for you for your transplant, and you have seven siblings. Then, I understand you and your brother worked together to do this transplant. What was it like for you to have your brother be your donor? What was that process like?

Thomas Goode:
So that process was wow. I'm actually the youngest of 11 siblings, but they could only test my biological [siblings] seven of them, including myself makes eight, but them seven got tested and my oldest brother, he said, "Look, you guys don't have to do anything because I already know that I'm the one." They were pretty much having bets on who was going to be my donor.

IMF Communications:
I think one of the things that people forget, we hear these stories of patients and their diagnosis and their treatment and how that all happens, but they forget you have real life, you have families, you have commitments, and I listened to your Myeloma Voices interview. I understand the North Carolina prison where you were working, couldn't hold your position for you while you were going through some of these treatments, and then you transitioned to being a stay-at-home dad. What was that transition like?

Thomas Goode:
So, that was another slap in the face when I relapsed after two months after my first transplant, because my initial goal was to have a transplant, sit out of work for maybe six to eight months, and go back to work with my position and resume what I was doing at work. 

However, once I had to go into that allogeneic transplant just six months after my first, that pushed everything back, and therefore by the time I was able to go back to work, I had lost my position anyway because of that. I was heartbroken from it. It was hardening to hear that news, that you are medically retired, that I can't go back to work and work in my position, because you figure at the time I was only 37 years old and at 37 you're telling me that I can't work. Somebody that's been getting up, going to work ever since my teens.

Now at 37, you're telling me I can't do it. So yeah, I became a stay-at-home dad, and it was a role that took me a while to get used to. I went through a mild bout of depression because I didn't want to be in this type of role. At the time, I was married, and I saw that I can see the stress that all of this had put on my wife because she was trying to take care of myself, and take care of the family, and go to work, and do all that she could do to provide for us. 

It was a situation where I had never been and a situation I didn't know how to handle. So it was something that I had to adhere to and I found ways to get out of my depression, and I found that out in the gym, and once I got a routine, I just took full advantage of it and I made the best of the situation that I was put in.

IMF Communications:
What was the routine like?

Thomas Goode:
I would take the kids to school, I would leave there, go to the YMCA, I would come back and cut the grass or anything that I had to do around the house, then I would pick the kids up from school, cook dinner, and get ready for the evening. So once my wife came home, all she had to do was check her mail, eat dinner, and get ready to relax until the next day.

IMF Communications:
How many kids do you have? How did your kids handle all of these changes happening?

Thomas Goode:
I have three girls, biological [daughters], and I have a stepson and stepdaughter. So, my kids, it was tough for them at first, but after they went through the relapses, they saw how I was handling the relapses because I was positive through it all. My positivity wore off on them as well, so that made them feel at ease that they knew I was going through cancer, but since I felt like I wasn't worried about what was next, they [weren’t] worried about what was next either.

IMF Communications:
That's a great testament to your strength, and you have to keep it together as a parent. I think people kind of forget about that. You're going through all of this and you have to keep it together for all the people around you, and also around that time or after, you can correct me about the chronology, your family moved from North Carolina to South Carolina. Your wife got a promotion that moved you there, and I understand you had a bout of shingles and you had to be isolated in a negative pressure room in the hospital for more than a week. I was just curious; this might be some insight you could provide to people who are going through COVID-19. What was it like to get through that kind of isolation and being ill at the time, and what can you advise people if they have to do something similar?

Thomas Goode:
If the audience don't know, the shingles attack a nerve in your body, and then it runs down that nerve. The shingles attacked the nerve in my lower back, where I had my problems at. So, that pain was a reminder of the excruciating pain that I dealt with when I was diagnosed with myeloma. So, my first instinct about the shingles was my cancer was back because I felt that pain again, and so I got an appointment for an MRI. 

The MRI came back, the results showed that I had lytic lesions in those areas, and that doctor told me that my cancer was back. After looking at my body, I was starting to get zosters all down my legs and I went back to Google and compared the picture of my leg to the zosters on the screen, and I felt that it was the [shingles].

So, I called the doctors back up here in North Carolina and I told them what was going on, and they advised me to go to the hospital there in South Carolina and tell them to admit me and give me an IV acyclovir to help clear these [shingles] that's in my body. When I went there, they said that I had MRSA (Methicillin-resistant Staphylococcus aureus), they said that I had MRSA and it was nothing like shingles or so on and so forth. 

So, I ended up calling the doctors back here in North Carolina and they [were] like, "If you can come up, please come up." I came back up here to North Carolina, and they saw it and they [were] like, "Oh wow." Because, what happened was, I had [shingles] on my body, I had chicken pox all over my face like a double dip, and they saw how bad I had it.

So, they [were] like, "We're going to have to admit you into the hospital." So, when I got to the hospital, [they] have a negative pressure room for patients like this, and it was just a sense of isolation. You couldn't talk to nobody. They had to bring your lunch in and put it in this one door, and then after they leave and close the door, then I can go in there and get it and come back out. The only ones that came in [were] the doctors and the nurses, the nurses, but they had to go through a protocol, the same thing. They had to scrub up and put vests and stuff on just to come into the negative pressure room.

Then once that door closed, they come in with me, just so none of my symptoms or anything from the shingles can go out in the hallway and affect the other patients dealing with their myeloma, because this was an area of where it's nothing but transplant, not just myeloma, but nothing but transplant patients. I didn't want any type of virus from myself to [inaudible 00:11:54] out and go and get them sick because I already know that they have a compromised immune system. That's basically what we are dealing with right now with COVID-19.

IMF Communications:
How did you mentally cope with that, just being by yourself and knowing that each second was challenging, I'm sure?

Thomas Goode:
I used it to my advantage. The nurse manager was right across the hallway and her and I became good friends during the process. I travel with resistance bands. So, I always have bands with me, so I just made myself a little makeshift gym inside the hospital room and I put a towel down and I would do pushups and I would lay a full towel down and do sit-ups, and I had my bands. I would throw my bands up under the bed and I'd make me a little press machine, so that's how I maximized my time, by using that.

IMF Communications:
Yeah, and physical activity definitely sparks mental clarity, it just clears your mind, and so you know that and you know how to go back to that whenever you need it, which is great. So another thing I was listening to your Myeloma Voices story, and this goes back to your finding out on your own that, hey, this could be shingles. You seem to have number of times spoken up to your clinicians when you have pain. You requested a PET CT scan when you had shingles and realizing to say to doctors, "Hey, I've got this pain and I need this test." What would be your advice to patients when they're reluctant to tell the doctor how to be a doctor? Not [that] that's what they're doing, but in the sense that you know your own body. How do you recommend patients advocate for themselves in those situations?

Thomas Goode:
What you just said. I know my own body and every patient should know their own body. Even after the shingles, I felt something different. I felt a little tweak in the middle of my back and I had one of my daughters push on it and it was excruciating. I was like, "Right there, push on it," and it hurt. So I called them and I said, "Hey, what kind of appointment do I have?" She said that it's just your quarterly checkup because by the time now, I'm only going to the clinic every three months. So, she says, "It's your quarterly checkup. Why?" I said, "I feel something different." I said, "Can you add a PET/CT? Because, I feel something different." She was like, "Okay." She was like, "What is it?" I was like, "It's just a little pain in my back, and I can tell it's not from exercising because I'm very careful when I exercise." I said, "It's something that I hadn't felt before," and she said that she’d call me back.

I came back up to North Carolina for treatment and we went to the clinic, and when I came out of the scan, she had told me that I had a mass that time on my body, on my T3 and T4, and it was getting in my ribs. I didn't feel the one in my ribs like I did the one that was on my spine. Knowing my body, that allowed me to catch this fast before it either got bigger or I got even more sick from it to a point where I couldn't move. 

I think that's what a lot of people should do, be able to tell [the] difference between what goes on with your body that you know that's normal and what's abnormal and be comfortable. The other thing is be comfortable about it, about telling your doctors that, "Hey, I feel something different," because a lot of people are scared to advocate for themselves because they feel like they don't want to tell a doctor what they're doing.

IMF Communications:
So sometime after that, I'm not quite sure of the timeframe, you started a clinical trial. When did you begin that and how was that recommended? How did you get on the trial? What was the process like?

Thomas Goode:
The process was earlier in my myeloma journey, right after that two-month relapse, when my brother got tested and found out he was going to be the donor, he was going through the process of his work up for being my donor while I was going through the process of a clinical trial. I was on three different drug regimens to get my numbers back down, and after I finished that and my brother finished his part with the donating part, then we [were] able to go through with the clinical trial.

IMF Communications:
So, your brother was going through collecting cells at that time. Was this a second allogeneic transplant that they were preparing him for?

Thomas Goode:
It was the first.

IMF Communications:
This was the first.

Thomas Goode:
Yeah.

IMF Communications:
Then you went through a second transplant with your brother as a donor.

Thomas Goode:
I did.

IMF Communications:
When did that take place and how was the process of that? And how did that feel, to now go through, actually, it was a third transplant, second time with the donor. What did that feel like to hear that?

Thomas Goode:
They actually looked at the NMDP (National Marrow Donor Program) to see if I had a match on the bone marrow registry, see if I could find a donor match on there that could possibly give me a different outlet or a different result with treatment. Unfortunately, I still don't have a match on National Donor Registry, so my brother was called in again to be my donor for this second allogeneic transplant, which was also a clinical trial.

IMF Communications:
Interesting, and there's so many life-changing things that happened. I understand you went through a divorce. What was it like to go through all these health complications with myeloma itself and then this life-changing experience, how did you cope with all that?

Thomas Goode:
Yeah, that was a tough part of my myeloma journey as well, because the brunt of that divorce was taking place during my third stem cell transplant. It was a situation where I was having stress from treatment and stress from my relationship, and they [were] both providing me a downward slope in my health. It just took a while for me to get to a point where I had to let all of this stress go and take that and build myself back up, and that's what I did.

IMF Communications:
You also went through something called orthostatic hypertension, which I'm sure you can explain better than I can. What was that experience like?

Thomas Goode:
So, one morning when I was going back to the clinic, I got up early. I think my sister had went outside and she had locked herself out. So, she was banging on the door, and I jumped up to go and open the door, and when I got to the door, I passed out. I just fell. I was able to reach up and open the door and let her in, and she helped me get up, and I felt good after that. Then when I got to the clinic, it happened again. So they checked my blood pressure for orthostatic hypertension and what that is, they test your blood pressure with you lying flat and they test it while you're sitting up, and then they test it again while you're standing. So, every time they tested my blood pressure, it dropped. So it was normal. If it was normal when I was lying flat, when I sat up, it dropped, and when I stand up, it dropped substantially. That was when they diagnosed me with orthostatic hypertension, and I was placed back in the hospital for that.

IMF Communications:
You had so many complications, I understand you also had C. diff, you had orthostatic hypertension, shingles. How do you cope not only just living with myeloma, but all these complications and continue to find hope and believe in your healing journey as you face all of these complications?

Thomas Goode:
After my relapse, after my second allo transplant, my cousin, he was my very close, close cousin and one of my friends that he and I just came off vacation together, us three went to Myrtle Beach and I told him that I accepted my disease. I accepted that the disease can come back at any time. I accepted that I can perish from this disease, and I told them from this day forward, I'm going to live my life to the fullest. When situations like this arise, the orthostatic hypertension, the C. Diff, the shingles, and now the relapse, it's part of the process. It's something that I cannot control, and I refuse to stress over things that I can't control.

IMF Communications:
Like you said, you're an advocate for living life to the fullest and as we started this interview, you're obviously into physical fitness, you were an athlete. What is your fitness routine like today, and what advice would you give to a myeloma patient who might be a little bit reluctant to engage in physical activity?

Thomas Goode:
So, I try to partake in physical activity at least five times a week minimum, six times if I can. I always take one day, which is Sunday off, but a minimum of five days a week I try to get in and do something. 

I have a lot of things — I have an indoor bike that I can ride, I have outdoor bikes that I ride when the weather permits, I've got into cycling outside, and I have a little crew that we ride together. 

I'm an advocate in the weight room, and one thing about [working out] inside the gym, I do know what to do and what not to do. I don't go heavy. I don't lift vigorously. I don't do wild exercises because I don't want other patients to look at me as a patient and think that they could just go from treatment to doing what I do inside the gym.

I wouldn't recommend that. I would recommend them first finding out if they are allowed to work out from their doctors because of their health, because of their myeloma status. They could have fragile bones. Their bone density could be weaker, or they could have tumors in certain areas that they can't do certain exercises and so on and so forth. So I would recommend that they talk to that doctor first, and then if they're able to work out, I would tell them to go at their own pace and then listen to your body. If your body's says rest, rest, because I do the same thing. If I feel like that this day I shouldn't go, then I listen to myself and I would not go.

IMF Communications:
Excellent, and just to wrap up, you've probably heard the statistics many times. As you know, myeloma is two times more common in people of African descent. So what do you think is important for African Americans to know about multiple myeloma?

Thomas Goode:
It's one of them type situations where I want to say you have to trust the process. People are so scared, especially in the African American community. They are so scared to actually go and get tested about anything, and then even when you're told that you have myeloma, some may refuse to go get treated for that. I don't know what the reasons are. It could be financial, it could be historical. So, I would just tell them to trust the process. It's something that we have to do. You have to advocate for yourself. Don't be afraid to advocate for yourself. That's another thing that I would tell them, that it's okay to question some of the doctors when they tell you something. It's okay to get a second opinion. Some just refuse to do that.

IMF Communications:
By the same token, what do you think is important for the medical community to understand about African American patients and myeloma, and also African American patients and their access to clinical trials?

Thomas Goode:
In the medical community, it is tougher because it'll be hard for someone that don't look like me to convince me to be on a clinical trial. So that's one of the things that I do as a patient advocate is explain to them how I have been there. I have trusted the science to say, "Hey, I want to be a part of this trial." I even explained to them. I said, "Hey." If they [were] to ask me, "Well, the clinical trial must [have not worked] because you've relapsed." So, I would tell them, "What makes you think that it didn't work?" It could have just parlayed long enough for me to get to the next set of treatment, and then I go to the next set of treatment, and then that doesn't work, I go to the next set of treatment because myeloma is evolving.

Back to what I would tell the doctors, or the physicians — that sometimes we have to meet the patients where they're at. I speak with a lot of myeloma patients in rural areas. They don't have the luxury that I have at four major institutions. So I would tell them to teach up these local doctors, let them know what to look for when it comes to patients that come in with these type symptoms, because this is something that where I lived, that the doctor would've never diagnosed me with myeloma because I would've walked in and he would've saw me as a physically fit black man. He wouldn't have ran the tests that I needed to be ran to find out if I had myeloma or not.

IMF Communications:
So where are you living these days? I understand you're part of a support group there, and what do you do with the support group? What's that like for you?

Thomas Goode:
I live in Durham, North Carolina now, and I was back at my clinic and my doctor came to me and asked me, she said, "Thomas, I want you to start a support group." So, myself and two others started the support group here in Durham, and I call us a very small but powerful group. 

We have two major institutions in between us and we have a lot of local hospitals as well. So, what we do is we take the knowledge from two different myeloma specialists, and we bring it to one in our group. Then this might be some things that we do on this side and some things that they do on their side, and we cross[-reference] our information and then we can take these ideas back to our doctors and they can take our ideas back to theirs, and it makes it so much powerful.

IMF Communications:
I think Thomas, you're a great example of what it's like for a patient to take charge of not own your own illness, but being part of the community and helping others, and that's hard to do when you're going through all of this on your own. You're a great role model for so many people, so I want to thank you for being our guest today. I know your story will be an inspiration to anybody facing any kind of adversity with their health or in their personal lives.

Thomas Goode:
Thank you for having me.

IMF Communications:
And thank you all for listening to today's podcast. This has been A Day in the Life brought to you by the International Myeloma Foundation. To learn more about the IMF and myeloma, visit us at myeloma.org.