Pod4Cure #3: Working Out with Cancer

In this episode of Pod4Cure, we are joined by a member of the All4Cure community to explore how a Multiple Myeloma diagnosis can change a patient’s relationship with exercise. Terry, a life-long athlete and champion weightlifter, discovered he had myeloma in 2019 after experiencing pain while working out. Hear him describe his myeloma journey, how his fitness goals have changed, and his advice for ways patients can get moving after treatment.

Sara Lippert (Left), Terry (Middle) in a weightlifting competition 2 years before his diagnosis, & Terry (Right) on the 1st place podium

Transcript:

Sara: Hello, and welcome to Pod4Cure the All4Cure podcast for patients with multiple myeloma, their families and everyone in between. Today I am joined by Terry, a multiple myeloma patient, champion weightlifter; and I'm really excited to get to talk to you today. Terry, could you tell me a little bit about yourself?

Terry: Yeah, well, I'm 63 years old. I live in central California. I was diagnosed with multiple myeloma in December, 2019, and I've been through treatment and a stem cell transplant. And I’m currently in (I guess you kind of call it) remission or complete response, MRD negative. So that's kinda where I'm at now.

Sara: Excellent. So Terry, I wanted to invite you on today and talk a little bit about something that now, post-pandemic, everybody can get back into, and that is the gym and exercising. It’s something that I feel like you have a unique perspective on as somebody who has had a history with not only sports in general, but with weightlifting. What was your history with exercise and fitness throughout your life and even before your diagnosis?

Terry: You know what, when I was younger, like in high school, you know, I was on the football team, pole vaulted in ran track, and played soccer in the winter time. So I was always doing it before and during high school. Then, after high school, I joined the military and when I got out, I got married and had a family. So I'd never really played any collegiate sports after that, you know. I was always involved in some kind of athletics, like I played ice hockey, I mountain bike raced. And then I got in later in life, after my kids got grown, I got into CrossFit for awhile. And then CrossFit kind of led me into weight lifting. It's like strength was always, I guess you call my strong suit. So I got into masters weight lifting and I competed throughout California in a masters group and division. And then I, in 2017, went to masters nationals. I won first place in my weight and age group. So it's always been a really good activity. My daughter also weight lifts, and she kind of helped get me into it because it gave us an opportunity to train together and see each other once a week. So that's kind of my athletic background, briefly.

Sara: That's really cool. And when you say weightlifting, is that similar to the more bodybuilding/powerlifting side or is it a whole different beast?

Terry: No, for a lot of people that don't know it's called Olympic weight lifting. It's actually what you see in the Olympics. There's only two lifts. It's the snatch and the clean and jerk. Definitely not anything to do with bodybuilding. And there's also another sport that a lot of people are involved in, which is powerlifting, which involves three lifts. That's like, squat, bench, and deadlift. And so I would say Olympic weightlifting, you know, Olympic weightlifters, just call it weight lifting. But anyway, that is probably a lot more athletic because you have to have quickness, strength, and speed, and coordination. As opposed to powerlifting, which is probably a little bit easier because you know, you're not moving so fast. A lot of people will describe Olympic weights like gymnastics with the barbell, right? So sometimes it may not look that hard, until you try it.

Terry: So anyway, there's a lot of technique. You actually train as a weightlifter for competitions. Probably for the last five/six years I did that up until my diagnosis. In fact, you know, that's what kind of led me to my diagnosis because I had a tumor on my spine and it was causing nerve pain and nerve damage. It actually prevented me from training or lifting. I was training for a meet and I thought that I had some kind of pulled muscle or something like that and went to the doctor. The thing is that they finally discovered a tumor on my spine. So, in a way, I credit being physically fit. Just training kind of led to probably earlier diagnosis maybe if I would've been like a sedentary person.

Sara: That's amazing. I mean, I've spoken to other multiple myeloma patients who have had kind of similar things like that happen. These activities that they love to do are actually what ends up catching something early on that maybe could have gotten worse before actually coming to light. After finding that pain, did you then just go see your doctor right away and were they able to diagnose it?

Terry: I would say it wasn't really quick. It was like a six month period. Kind of when I think back, I wish things would have happened differently, but I think everybody I've heard so many stories, you know, with other myeloma patients. I'm in a support group, just hearing how people finally discovered what it was. I went to physical therapy thinking that I had pulled a muscle or something. I did that for eight weeks where, you know, I didn't really do any kind of x-rays or scans or anything. And then after two months of that, you know, pain wouldn't go away. So then I went back to the doctor, had x-rays and then finally a CT scan of the spine where they saw a mass and then they did an MRI. So the whole process, you know, from when I started feeling pain and couldn't train took about six months to actually figure out, you know, or I got to the point where I go, oh, you have multiple myeloma. You have a mass on your spine, but you know, I've listed other stories where people are gone for a year or two years and not knowing that they had it when they actually had some kind of symptoms

Sara: Had you known what multiple myeloma was before you were diagnosed? I know some people, the first time to hear about this disease is when they hear they are diagnosed.

Terry: No, I didn't have any idea what multiple myeloma was. I did have a really good friend that had multiple myeloma, but a year earlier than me. He was a, you know, similar person, really athletic, physically fit, did CrossFit. And I just knew him as having cancer, I never knew the details of it until I was diagnosed. But no, I'd never heard of it. I became educated pretty fast.

Sara: Yeah. That's, that's what I hear. It becomes not only figuring out how can I stop this, but what is this. It's only been a couple of years now, since you were diagnosed, how has your diagnosis affected your relationship with exercise and fitness? Do you still weightlift?

Terry: I do lift, but I've had to modify a lot and I don't obviously use as much weight because, you know, damage to my spine and nerves. So I've kind of modified things that definitely, you know, I thought one of my goals once I got done with the transplant was maybe to go back and try and compete. That goal's kind of still out there, but I'm not gonna kill myself if it never happens. You know, I think after my transplant, I started to train and weight lift a little bit, but kind of discovered I was probably doing too much. I still try to lift, with myeloma and being immunocompromised. Like for example, I think the month of June I caught a cold and wasn't sure what it was, it seemed like it lasted for a month. So I basically quit doing any really good exercise for a month till that cold was gone. I think after my transplant, when I finally felt like I had some energy, you know, I tried to do a little bit, but I know everybody's myeloma is different and kind of took it day by day. If I felt I would do something, but nothing really structured like I used to do.

Sara: Yeah. I can understand the blow that that can be for having to change your habits and adapt to the things that you like to make sure that, you know, you're not hurting yourself, especially with myeloma being a disease of the bone marrow and the blood. Breaking bones is such a scary thing. I recall when we spoke earlier this year you did mention your friend who you found out also had multiple myeloma. I remember him giving you some advice to say that when going into the stem cell transplant that you wanted to be as physically fit as possible. Could you speak to that a little bit and maybe how you're prepared for that really big surgery?

Terry: Yeah, stem cell transplant. My friend, he had gone through a stem cell transplant a year earlier and he just said “you want to be in the best shape you can be in because it'll help because it's kind of tough.” So, it was actually difficult. I was doing the VRD treatment, which is the Velcade, Revlimid, and Dexamethasone every week during that time. I definitely did not feel like working out. And so when he was telling me this, like, “You need to go in there strong,” like, well, you know, that's easy to say, but I don't feel like doing anything. So, you know, I tried. I think I was fortunate in the fact that I was in pretty good shape when I did get diagnosed. So I didn't lose a lot but definitely was not as bad as I was after six months. I actually did five months of that VRD treatment before my stem cell transplant. So I just approached it as, you know, do as much as you can. And I think I did okay.

Sara: In that same kind of vein, do you have any advice for multiple myeloma patients who are possibly looking for safe and effective ways to exercise throughout either treatment or afterwards in remission?

Terry: I know, I understand everybody's myeloma affects them differently. And one of the first things you just want to do is take it slow and listen to your body. I think one of the best things you can do is just start out, you know, walking, getting back on your feet and moving. I know that during my stem cell transplant, they had a physical therapist and they said that the people that get out of the transplant, I mean, you know, sometimes they keep you. I went to UCSF, different facilities have different, I guess, methods for the stem cell transplant. It did say the patients who get up and walk every day, usually do the best and get out of there the fastest. So I kind of had a goal when I was there. I just kind of forced myself to walk every day around the floor in the hospital, which was pretty boring. But when I got out, I would go for walks every day with my dog. I think, you know, just mentally too, that is something that really helps too. And then after that, you know, whatever exercise, people are interested in. I don't have any recommendations, just do what you enjoy and try to move as much as you can.

Sara: Definitely. As my father always likes to remind me, a body in motion stays in motion. Going forward, I wanted to open the floor to you in case you wanted to share anything. I always like to throw that out.

Terry: I think just one piece of advice that really helped me. I'm not a big social person and I joined myeloma support group in the bay area. I joined it during COVID, so they had gone to virtual meetings, but it's really been a good source for information. At first I kind of thought, “Well, I don't really need to be in a support group. I don't, I didn't feel like I needed support.” But I joined it just to kind of listen and learn, I've really found that I enjoy it and it's made a big difference. That's one of the things that I would highly recommend for anybody that had myeloma or any kind of cancer. A support group really helped me. I'm a dog lover, my two dogs are sleeping at my feet right now. They've been a big help to me hanging around. So, you know, especially during COVID that's all I could offer as far as recommendations, I think.

Sara: Well, that's awesome. Join a support group, get a dog. 

Terry: I had to keep moving for sure.

Sara: Well, thank you so much, Terry. It was really wonderful to be able to talk with you today.

Terry: All right. Well thank you for having me and asking me to be on this.

Sara: Thank you so much for listening to this episode of Pod4Cure. If you or someone you know has multiple myeloma and would like to register with All4Cure for free, you can visit All4Cure.com.