Pod4Cure #6: Myeloma Support Groups

In this episode of Pod4Cure, hear from Chris Beebe, facilitator of the Northwest Multiple Myeloma Fighters! support group. Serving Washington, Alaska, British Columbia, and more since 1998, the MM Fighters! are dedicated to providing information and support to myeloma patients and their families. Listen as Chris describes his myeloma journey, how he discovered the group, and how he serves hundreds of patients as the group’s facilitator.

Click here to learn more about the MM Fighters!

Sara Lippert (Left) & Chris Beebe (Right)

Transcript:

Sara: Hello, and welcome to Pod4Cure, the podcast brought to you by All4Cure discussing health care for patients with myeloma, their caregivers, and everyone in between. My name is Sara, and today I am joined by the Northwest Multiple Myeloma Fighters! support group facilitator, Chris Beebe. Hi, Chris, how are you doing today?

Chris: Doing quite well. Thank you. Nice to finally see you in person.

Sara: I'm glad we got to connect! Now, before we kind of get into your role as a support group facilitator, I'd love for you to tell me a little bit about yourself.

Chris: I'm a Midwesterner born and raised and went to college in the Midwest. After a very quiet beginning, I changed my major senior year to Asian studies, and that brought me overseas. I ended up working and living overseas for about 16 years on and off during my career in Taiwan, Hong Kong, and China. And that's also where I was diagnosed with multiple myeloma.

Sara: Wow. That's really amazing. Do you speak different languages?

Chris: I speak Mandarin and some Japanese.

Sara: Wow. That's incredible. I was in a Mandarin class for about two weeks, and it is an intense language. I commend you.

Chris: It's a difficult language, but being immersed in the culture makes it easier to learn it. I had a terrible time with French, so I don't know why Mandarin came easier, but it did.

Sara: I can't speak French either. So you were diagnosed overseas. If you don't mind me asking, would you be interested in sharing your myeloma journey up to this point?

Chris: Sure. I was living with my family over in Shanghai, China, and one day a bus I was on had to slam on its brakes. My arm hit a pole, and I ended up with a bruise on my bicep. The bruise just kept on spreading from my biceps all the way to my elbow, so I knew something was wrong. We went and saw a doctor, and he said, "Oh, I don't think so. Nothing to worry about, we'll just take your blood, and I'll get back to you tomorrow." Well, he called three hours later and said, "Please come in." I came in, and he said, "You are very anemic right now. You need to go to Hong Kong to go see a hematologist because there's definitely something wrong." My family and I said, "Okay, well, it's not any big deal. We took a pack for four days to go down there and said, "We'll just enjoy Hong Kong while we're down there."

Chris: What a mistake. We went down and saw the hematologist, and he looked at the results and then did a few other tests and said, "You've got cancer." They did a bone marrow biopsy and found out a day or so later that things were pretty bad. About 80% of my bone marrow was gone. Unfortunately, he misdiagnosed me. He thought I had Waldenstrom's disease instead of multiple myeloma, which is similar in many ways, but also there are some key differences. If you're not used to myeloma, it's easily misdiagnosed. And I ended up in the ICU for six weeks because of the mistreatment. My lungs filled up with fluids. My kidneys stopped working. My liver swelled. My heart went to 170 beats a minute. I was in fairly bad shape. I lost 30 pounds in two weeks. It was it wasn't good, but they stopped treatment, and they got me back to more or less health.

Chris: And once I was able to understand what was going on again and things were working well, my brother, who lived in Seattle, and a good friend who was in medical devices, began contacting different cancer centers in the United States. And we settled on SCCA (Seattle Cancer Care Alliance) because I had family in the area, and it was a tremendous center for supporting blood cancer. They didn't want me at first because I was in bad shape, but then they accepted me when I got in better shape. They medevacked me to Seattle. I spent a week in the hospital getting all the tests that needed to be done and getting my heart back under control again. And then I started treatment. The rest is fairly routine. I had six months of treatment, had a stem cell transplant, three years of remission. Then I had a relapse and had a year of treatment there.

Chris: And now I'm in the middle of another relapse. It was a rough journey, but it also taught me some important lessons, such as always get a second opinion for any of the big decisions. We were in the middle of nowhere, didn't know what we were doing. And we went with a doctor who we believed in, and he was an expert. And that’s how I ended up in the hospital. Also, see a myeloma specialist because it's a very strange and difficult disease to understand; I learned that the hard way. The third was to always stay positive. An ICU nurse came to see me one night late when I was in probably the worst shape ever and asked me about my faith and what I believed in. The nurse said, "You have two jobs. One job is to eat because if you don't eat, you're not going to be here. And you have to be here for your family. The second is you've got to stay positive no matter what because if people come in and they're down, if you make a positive, you come out more positive. If they come in positive and you're down, they go away less positive, and then you're down even further. So always look on the bright side." That's sort of all that advice has guided me ever since it's been key to really do well against myeloma.

Sara: That's a really intense diagnosis story. And were you familiar with myeloma before you were diagnosed?

Chris: I had never heard of the disease. My brother had non-Hodgkin's, so I knew something about blood cancers but never heard of myeloma.

Sara: I've found it can be a common experience for myeloma patients to be diagnosed with something that they've never heard of before. Finding information that is accurate and helpful, regardless of misdiagnosis (which is a worst-case scenario), can be super, super difficult. I think that's why I'm really excited to talk to you about your role as somebody in a support group because I feel that myeloma communities are a really good way for patients, especially newly diagnosed patients, to become informed and learn more about something that has dropped into their life, and maybe don't even know where to start. What was your first experience with myeloma support groups?

Chris: Well, about three months after my stem cell transplant, a group in Seattle held the Defeat Myeloma fundraiser. I had seen that card at the SCCA, and I said, "Huh, I should go do this." So I raised a little money in a couple of weeks and went there, met a bunch of myeloma patients. I had no idea there were so many. They told me about a support group in the Seattle area, which is called the Northwest Multiple Myeloma Fighters!, which we all just call MM Fighters!. I might as well go; let's see what I can do. I went there the first time, and I think like many people say, "Okay, well it's a meeting. It was interesting, but what can it get me? I don't need it. I'm better now," et cetera. But then I thought a little more. I said, "Well, I could use a little more education. Why don't I go back? Give it a second try. See what happens." And that just got me hooked because I met people. You got the support you needed, you got advice, you got myeloma education. And just ever since then, I've been with the group.

Sara: So MM Fighters! group, in reading about it, I saw that it has an actually really long history. Can you tell me more about the group itself?

Chris: It's the only support group that I know of in this area. A group of patients and their caregivers formed MM Fighters! in 1998 when there wasn't really a lot of support throughout the United States. One of the caregivers, his wife, passed on shortly after, as did the other founders. So he ended up running the show for 22 years, which is really commendable on his part to help people when he didn't even have the disease. But Tom Blakely has done a fantastic job setting it up. And since he was the only one in the Northwest region. He made it reach out to everyone. So we have people in Canada, in Oregon, all the way to Colorado, down to California. They have joined us and stayed with us or have moved and stayed with us. This was put together for education, support, and service, and they've done a great job. I guess we have over 350 people on our email list. It's a pretty amazing group.

Sara: What does a typical meeting look like with MM Fighters?

Chris: Group meetings follow something similar, but there are always changes to it. We start off with an hour of a speaker. So we get an educational speaker each time. We try to find areas that are hot topics right now, such as when CAR T cells came out, or areas of interest such as physical therapy or new treatments. So we have doctors, nurses, attorneys, et cetera, all come to talk to us. And for an hour they've talked and then we have a lot of giving and taking questions. Then we have an hour of patient round-table where new patients introduce themselves. Other patients either tell us about new things they've done so that everyone gets excited because they want to share the positive news. There are concerns or questions or if they need to understand things. The group is pretty large, and we have anywhere from 20 to 60 people at a meeting, so we are able to share a lot of information, a lot of experiences. And I think that's what makes it pretty special. And then afterward, we put together some notes about what the presentation and the meetings were like and send it off to all the people, especially people that can't attend meetings for whatever reason. So we try to keep spreading the education around as much as we can and try to keep the whole group connected.

Sara: That's awesome. When did you begin getting more involved in MM Fighters!, and what exactly is your role with them?

Chris: First, I was just a member there, but then Tom Blakely had done everything himself for so many years. You could see he was a bit overwhelmed from time to time, so we went up and asked him if there was anything we could do to help. We got a little job here, a little job there. On and on, it just started to build, I guess. And then Tom wanted to wrap this up. He was getting a little older, and 22 years is a long time to run a group. So he decided it was a good time to move on. And he asked me if I wanted to lead. He was wise enough not to just dump it all on my lap. He brought a board on. So we have a board of 10 to 12 people that help with decisions about the group, which way to go, speakers, et cetera.

Chris: And they do things! We have a lady that's in charge of membership. So, anyone that's new writes to her, she follows up, tries to keep the membership roles accurate. We have people who greet when we have someone come to a meeting so that everyone is always welcome and doesn't wander into a meeting and not know what they're doing. We have someone in charge of fundraising for making a little money so we can make donations and keep the group going. So we have a really good group of people supporting it, but also try to get as many people interested and active.

Sara: That's incredible. Could you tell me a little bit more about your role as a facilitator?

Chris: I help guide the meetings. When we have meetings, I help make sure that people stay on task, shall we say? Sometimes people tend to wander off, and we get it on different subjects, so you want to focus because we only have two hours each month to talk. I also help set up schedules for the meetings to try and coordinate them so everyone can attend. I also find speakers because there are a lot of speakers around the United States, and it's sometimes hard to locate someone who has the time to talk to you. So it's a lot about trying to coordinate the meetings and set them up. I also find information and a pass to the group and sort of monitor the emails to make sure that the emails are again on task. And I work with the board, as we call it here.

Chris: I don't know everything. I definitely don't have all the knowledge and experience. To have other people who have had myeloma for a while and have different experiences and have them join up. Their support knowledge is a great thing, and we help move the group forward. So it's busy, but it's really rewarding. You learn a lot. When people write and say, "That was a really good meeting," I mean, that's exactly what you need. It really helps fire you up. You look at the members, and when members step up and when they contribute, that's what's exciting because you only can put people in the right place. You can't do everything. And then to have their support, give their experiences, have them come up with ideas. I think that's what's key to a support group, just unlocking everyone's potential. Not everyone knows what they have until the situation comes up, but once they open up, that's what's exciting. So to be able to guide the group, give everyone the platform to talk, that's what the benefit is. It really feels good to see that happen and to just listen to the people and have them discover something.

Sara: It sounds like you guys stay really connected, both in-person and online. A big question that I have is in regards to a little thing called the global pandemic that hit about a year ago. I was wondering, did you guys have to adapt? Do things look different now?

Chris: It was tough at first because it got shut down pretty quickly, and we weren't sure what to do. Then we were fortunate that we had some good support from the IMF, the International Myeloma Foundation. They have started many support groups throughout the United States. And they were kind enough to offer the groups the ability to use their Zoom for no charge underneath their license. They spread out this same license to all their groups, and for the last year and a half now, we've been able to piggyback on their license for our meetings. Without their support, it would have been much more difficult. We're very thankful that they were able to do that. It's different because we don't have quite as many people in the meetings, but it's also easier for many of the older people to listen in because on video, it's so much clearer than in-person.

Chris: If you're not sitting in the right place or if a speaker turns his head when you're in person, a lot of the older people might not be able to hear it. With a computer, it's so much easier. It's easier to see the slides and things. The online meeting has been a real benefit because we've also attracted people from pretty far away that didn't even have a support group before. That's been a great benefit as we go forward. Once we're back to in-person meetings, I think that it's always going to be a hybrid meeting because you're going to want to reach out to people that are far away. So it changed it, it made it more difficult at first, but then people made the adjustments. As we go forward, I think person to person is very important for the connections you can make and for the support because there's a lot of emotional support you need, but online is also going to be key to reaching people that can't move as easily as others or that are farther away and still want to become part of the group. So it changed it, but it probably changed it for the better in the long run.

Sara: I think that's great. I'm glad you guys were able to adapt to a hybrid model. I can definitely understand the difficulty at first, just dealing with all the technology. So going off of that, Chris, and just your extended knowledge of support groups, do you have any advice for myeloma patients or even just patients in general who are considering joining a support group?

Chris: Well, I definitely think you need to join one because you never know what you're missing. And again, myeloma is a very complicated disease to get an education is key because there are so many places to get it, and you can get overwhelmed. And I think that support groups are a great place for that. It's also wonderful to have support because I've talked with several myeloma patients who didn't even know another myeloma patient, and they were really lost. To have someone in there to talk to and who's gone through similar experiences, I think, is key to a lot of people. And the thing is, you don't always have to be there. We've had people with us for a number of years, and then when they're in a very good place, myeloma isn't always high on their radar. They said, "Okay, it's time to back off a little bit," and they don't come to the meetings for a while.

Chris: They apologize, but I tell them, "You're in a better place. You do what you need to do because we'll always be here when you need us." So you just have to live your life as you want to but to be able to get the solid foundation, to make the connections, to have the support you need. I think it's key for anyone, especially in the beginning, just to be stabilized and to know that others have gone through the same thing and that you're not alone.

Sara: I think that is incredible advice, and I hope it reaches the people that need to hear it. Thank you so much, Chris. I've had such a really wonderful time talking to you today. I wanted to just open the floor for any kind of closing comments that you may have.

Chris: Support groups definitely have a key reason for a lot of patients. It's not always something that people need, but there are always key times in your life that you need it. Myeloma is a crazy disease. Try and find an expert, I believe there are about 250 experts spread throughout the United States. You need to find one because they found it's, I think 20 to 40% better results when you have your treatments guided by an expert than just by a regular oncologist because they know what's going on. There's great support out there, like All4Cure, something that a lot of people need to take a look at because it does have some great benefits for a great majority of patients. I think they can learn a lot and benefit from that. So look at the different groups out there. Look at support groups and make sure you get an expert on your side. And you're doing that. You should be off to a pretty good start to your journey.

Sara: Thanks so much for your wisdom today. It was really wonderful to pick your brain and learn more about you. Thank you again, and I hope you have a really wonderful day!

Chris: You too! Thank you very much for the chance to talk.

Sara: Thank you all 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.