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Coronavirus: Being Physically Distant But Staying Socially Connected

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Published on April 9, 2020

Key Takeaways

How are myeloma patients feeling about the coronavirus?  What are support groups talking about during this time?

During this People Are Talking program, support groups leaders Maddie Hunter, Gail McCray and Jack Aiello join Cindy Chmielewski to share how they are coping, shifts in their support group logistics and topics they are covering.

Watch for tips on how to stay socially connected during this physically distant time.

[Due to extreme load on our website and Zoom platform, viewers may experience a time delay between the audio and video of the interview - please note the transcript can be read below.]

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Transcript | Coronavirus: Being Physically Distant But Staying Socially Connected

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Cindy Chmielewski:

Hello everyone. My name is Cindy Chmielewski, and I'm with the Patient Engagement team here at Patient Power. I live in Lawrenceville, New Jersey, and I was diagnosed with multiple myeloma in 2008. So I've been living with myeloma for almost 11 years now—for over 11 years, I can't do the math. So today we're doing a program called People Are Talking. And the topic of today's program is COVID-19 in the myeloma population.

And our guests today are support group leaders from around the country. We have Jack from California, we have Gail from Atlanta and we have Maddie who lives in New York, but is facilitating the support group in Philadelphia that I belong to. So welcome, everyone. And before we get started, could everyone just take a few minutes to introduce yourself and tell us a little bit about your support group. Why don't we start with Jack?

Jack Aiello:

Sure. My name is Jack Aiello. I'm from the San Francisco Bay Area and have been diagnosed with myeloma 25 years ago now. And have been facilitating our support group in the Bay Area for about 15 years.

Cindy Chmielewski:

Do you have a big support group, little support group?

Jack Aiello:

It's a large support group. We actually have probably 600 people on our mailing list, and we actually meet and rotate our meetings across four different cities in the Bay Area. And at each meeting, we have probably 40 or 50 people, some are the same, but oftentimes patients will go to just the support group meeting closest to them.

Cindy Chmielewski:

Okay, great. Maddie, how about a little bit about you and your group?

Maddie Hunter:

Yeah. So I'm Maddie Hunter, and I was diagnosed in 2001. So if the math serves me right, I think that makes me an 18-year survivor, and I also lead a very large support group. In Philadelphia, our list is about 350 people. And like you, Jack, at any one meeting, we may have 40 or 50 people show up. And we serve the larger metropolitan area of Philadelphia. So we have people from New Jersey, as well as different parts of Pennsylvania. And although I live in New York, I haven't always lived in New York, so I used to live closer to Philadelphia and became the leader in 2003. And I just can't let go of my group. They're my people. So I make the schlep the three hours every month to be with those folks.

Cindy Chmielewski:

And we're very happy to make the schlep for...

Maddie Hunter:

Thank you.

Cindy Chmielewski:

...every month. And Gail, how about a little bit about yourself?

Gail McCray:

Okay. So I'm Gail, and I am a 12-year, this is my 12th year as a myeloma survivor, a myeloma warrior. I was diagnosed in 2008, and I'm in my second remission. I work with a myeloma support group in Atlanta—one of two support groups in the Atlanta area. And we average about 25 people per meeting, more than that on the mailing list, but about 25 people per meeting.

Cindy Chmielewski:

Okay, good. So we talked to a number of people through our roles. And I guess we have a pretty good idea right now how the myeloma community's feeling. But first, before we start talking about others, let's talk about yourself. How are you feeling? How are you coping with these challenging times?

Gail McCray:

I think I'm trying to maintain being as normal as possible, trying to keep things as normal as possible, knowing that you have to keep physical distance, but staying connected socially. It sort of goes against what they're saying. But I think when I hear it, it is a physical distance, but they are encouraging us to maintain social connectedness. I'm in remission, that means that I usually go to the doctor twice a month, once just for lab work. And the second time I do go every other month for doctor's visits. Those visits for the time being have been canceled.

I did have a PET scan scheduled. They did not cancel that PET scan. I did go for that PET scan on Monday. But with everything else, I still work part-time. Everybody's doing Zoom, and it seems like we have more meetings now than we did when we were actually physically at work. I guess they want to be sure that everybody's working, and I work with medical students. They just had their exam, and they did it at home, the campus is virtual. And doing things like trying to keep up my professional credentialing. So I've been doing webinars and things like that, but I don't usually go to the grocery store, because that's not what I do. That's a problem. And I've been going even less, because I'm trying to get there early in the morning. And if I don't make it early in the morning, then I don't go.

Cindy Chmielewski:

I like what you said, Gail, that maybe we should be calling this physical distancing, but social connectedness. Because the social distancing, it kind of almost makes it so hard. You almost feel like you can't say hello to the neighbor that's across the street and far from you, because you're supposed to be social distancing. So I like the physical distancing, but social connectedness. Maddie, how are you faring?

Maddie Hunter:

Well, it's so interesting. I've been in remission for such a long time. The virus has reawakened in me feeling really vulnerable. It's an unsettling feeling to know that even though the remission is there, myeloma still makes me much more vulnerable to the virus than others. And in our family, my partner in life and my young adult son are both immune-compromised as well. And so the three of us are—there's nobody to send out to the store or whatever, because we're all sort of in the same boat. And so it's unsettling. I think it's encouraged us to come up with creative solutions to try to manage all the time. And like you, Gail, I mean I'm on Zoom for everything under the sun.

I've done a Zoom gender reveal, a Zoom memorial meeting for one of our members who had died. I've done Zoom political advocacy protests. I mean Zoom is like the thing, which is great, because it's keeping us connected. And like you say, "Cindy, you're physically not connected, but the social connected is there." And I think that's helped me. I'm exercising more than I ever have exercised before, because it's like, you're laughing, it's like something to do, and it's good for us. And we have lots of trails here in the Hudson Valley. We're six feet away from every single person, and sometimes there aren't very many, but I find that really helps. So it's quelling some of my distress.

Cindy Chmielewski:

Your exercising reminds me of this little Facebook meme I saw, or meme, I don't know how to say the word, of a dog standing on top of the counter saying, "No, I'm not going for another walk today."

Maddie Hunter:

I saw that, yeah.

Cindy Chmielewski:

Just made me laugh, but that's how it is. Like, "Okay, what can I do? I'll go for a walk." And my gardens, I keep on turning over that soil over and over again. I mean the soil was ready to plant months ago, but it just gives me something to do, get my hands dirty. How about you, Jack, how are you coping?

Jack Aiello:

Oh, I think I'm coping fairly well. I'm a bit like a Maddie in that I've been in remission for a long time and not on treatment. And so for patients in that role, I don't think I'm unlike them. I wonder how immune-compromised am I? Yes, I have a lower than normal white count, but I'd like to know more in terms of markers. What does immune suppression mean? But I've just decided that if you're a myeloma patient, you should assume you're immune-suppressed period, and go cautiously with that. , like others, have not only been on Zoom, but GoToMeeting is other video conferencing. Skype I've been doing a weekly with the kids and grandkids who don't live nearby anyway. And just yesterday I was on something called BlueJeans, which is another video conferencing program. So I've gotten to learn and use and now an organizer in a couple of different web conferencing. So I look forward to continue to learn more about those programs, as well as stay educated, as we are all are used to doing with myeloma, and now stay educated with COVID.

Cindy Chmielewski:

Yeah, it's very challenging times. I guess my biggest fear that I've been having is I've been able to keep a social distance from others. I haven't been out of my house in probably over three weeks, almost four weeks, not in the stores or anything like that. But my husband's still working. He's considered an essential employee. So it concerns me that every day when he comes home from work, what should he be doing? It's crazy. And sometimes I guess I overreact because he says, "I'm washing my hands. I'm staying away from others." I said, "But maybe you should be stripping on the back porch." And he's not quite ready to do that yet.

So that's where my concern is. I can control me and my exposure, but I can't control him and his exposure. And he needs to go to work, so that that part is hard.

Let's talk a little bit about our support groups. When was your last meeting? Are you planning on other meetings? How are we doing support groups in these times where probably the support group is most needed? Because we need to support each other, and we understand each other's fears and needs, but we can't do it in-person. Anybody want to start? Maddie, how about you start this time? I know the plan there. I know what you're going to say but go ahead.

Maddie Hunter:

Okay. Well, you can chime in. But we canceled our meeting in March. And it was a tough decision, but we decided that it was more than we could bite off to do something with any of the technologies really quickly. And so our plan is to have our first group meeting in April, the 11th of April via Zoom. But in the meantime we've been calling members of our group who are regular participants, and checking in with them—both from the standpoint of trying to find out how they're doing, and also to find out what's on their minds that could help us to form a really good structure for the April meeting. It's been a very odd thing to not be able to connect with this group. And at the same time, it's a very awesome thing to think about these large groups like Jack. And actually the three of us really have large groups that when you all get together via a specific technology platform, it's a bit of a challenge to offer the kind of support that we normally do in-person.

So we're on a learning curve, and we're learning a lot. People are very happy to have us do the old-fashioned phone call. I'm hearing from members of our leadership team who are doing—we've parsed out the large group, and everybody's got a chunk of folks to call. And we're hearing really appreciative things back from folks about that. And that may encourage more people to show up in April, which will be an interesting thing for us to figure out how to do it.

Cindy Chmielewski:

Jack, how are you continuing with your support groups?

Jack Aiello:

So we actually did our support group meeting in March via GoToMeeting. I hosted it and facilitated it. And I was quite surprised—and we probably had 25 folks on there, which was more than I thought we'd have. And since we have a speaker in April, I expect we'll have closer to 50 folks on this GoToMeeting platform.

Cindy Chmielewski:

Let's hear from you. How are people in Atlanta sticking together during this time?

Gail McCray:

Yeah, I'm just seeing so many different opportunities with this challenge of COVID-19, as I was listening to Jack and listening to Maddie. But we also had our support group meeting this past Saturday using the GoToMeeting platform. We had about 22 I think on the call on Saturday. We had an agenda, and the agenda was just to talk about myeloma, mostly to talk about myeloma and COVID-19, also offering some practical suggestions for how to walk through it. And we had someone to present that, but we also had people—because people have wonderful creative ideas about how they're doing things. So what we shared was the—and let me say that IMF provided the GoToMeeting platform for us and helped us with the training. So it did go mostly smoothly. There were some things that I didn't know to look for, but we got everything fixed, and I think we'll do fine next go-round.

So we shared the 10 top questions from Dr. Durie and kind of walked through that. And one of the questions was about "What if you have a stem cell transplant scheduled for this period of time?" And Dr. Durie's response was, "Try to delay it if at all possible. This is not a good time." But one of our member's doctors said, "We're going to go with it." I guess it was that time because so many things, there are guidelines, and that's what they are, guidelines. But each of us is so individual in our treatment and where we are in the treatment. And so the husband is the patient, and they're going to go forth, but she wanted to get some thoughts. And we talked about the immune system being wiped out, and not being able to have visitors and those kinds of things.

And fortunately, the place where they're having the stem cell transplant is an institution. Well, their practice is that you stay in the hospital for the duration, versus the other place that does most of the transplants, they send you home every day. Maybe they changed during this crisis. I don't know. But that was one of the things. And she said, "This virus maybe has a silver lining in that we're keeping family and friends away, who would under ordinary circumstances, no matter what you tell them, they're going to try to visit you." And so I just thought she was taking it very well, and she's going to do all that she can.

The other thing is the whole thing about just cleanliness, and the handwashing, and wiping surfaces down, and bringing groceries in the house. And how all of those things need to happen. There are so many sources, YouTube sources, that can help with that, but it's so important for all of us to go to the reliable websites, like CDC, for the most part now that I think that's our go-to place, and how to wash your hands. And I'm not sure if there's one that CDC has on how to bring groceries in, but with immune-compromised systems we can't be too careful, and it's teaching us all of those things that we all need to know about how to do that.

Cindy Chmielewski:

Exactly. I just know what a vital part you all play, because we are probably connected through social media, we've been seeing these things. But I know there are members of our support group that do not have the resources that we have, and it's just so important that we are able to share what we have learned with our groups. So finding a way to do that is just so vital. So let's talk about what we're hearing. What are the main concerns from your members that you're hearing about? Jack, how about you start this time? Some of the main concerns that you're hearing.

Jack Aiello:

I don't think it's much different than everybody is asking. Obviously, it's "When will these shelter-ins end? When will life get back to normal?" Everybody's asking those questions. Myeloma and other cancer patients are probably asking, "How immune-suppressed am I?" And I think they're getting very specific, they hear about, "Can my appointment be rescheduled? Can my transplant be delayed? Should my dosages be modified that ones that might also suppress my immune system? Or should I change from infused treatments to oral treatments, to avoid that in clinic meeting?" So I mean those are kind of standard questions. The good thing about this whole COVID virus thing is that there's lots of information out there from reliable sites, whether it's IMF, MMRF, Patient Power, Myeloma Crowd, they've all interviewed experts. It's good to listen to the most recent meeting, because things can change day by day. But there's good information out there. As myeloma patients, we hopefully are depending on knowing as much about our myeloma as possible, and now it comes down to also understanding the COVID implications as much as possible.

Cindy Chmielewski:

And we need to learn how to advocate for ourselves, especially for those individuals who are maybe not being seen by a myeloma specialist, who may not know maybe the ways that they can modify their current treatment programs, to reach out to a specialist, or share the information that they are gathering maybe through the reliable services that you talked about, Jack, with their local community oncologist.

Gail McCray:

And there are so many places that are using more telemedicine because of the virus—and so opening up that as a potential opportunity to connect patients who are not being treated by a specialist with those specialists.

Cindy Chmielewski:

Maddie, anything else that you're hearing?

Maddie Hunter:

So I think that it's a big opportunity for the whole community, I think, the doctors included. I think docs are probably liking some of this remote kind of connections, especially those that may be more introverted, or who may have less comfort with the sort of up-front interpersonal things. I wanted to add that another revision that I'm hearing about for treatments, it's a more specific thing that what Jack referenced is, the question of "Can I skip my lab appointment?" I'm someone, as an example, I get monthly labs, but I've been in remission for a number of years. And I was nervous frankly about skipping my first month's a lab appointment.

This is just like it's a part of my routine. I found that it was helping me feel confident to be able to see my profile every month. So I had a discussion with my nurse practitioner about what's the implication of this? And I realize that some people don't get their labs drawn more often than every three months. But nevertheless, that's another thing we now—I guess the point I'd make is there's a little bit more attention to personalizing some of what is going on for us, that we were on the trajectory for that anyway in myeloma and so many of our treatments are so tailored to our particular profile, our genetics, whatever. But I think this has boosted that in some ways, which I think is very exciting.

Cindy Chmielewski:

I agree with you, Maddie. And I made the choice of not going to get my labs drawn for my last two or three weeks ago, just because I was nervous. And I didn't call my nurse practitioner wrap, I probably should have. But I just didn't go. And I was happy to find out a couple of days after that like some of the big labs like LabCorp now have the curbside service. You can now call and check in from your car, you wait in your car and then they will come and get you to do your lab one-on-one, and go back to the car. So that made me feel much better. That maybe next month I will go get my labs done and not be defiant or non-compliant. I don't like being that noncompliant person, but I was scared.

There was a discussion in one of... I've been to so many meetings. But there was a discussion in one of the meetings that maybe the hospitals will start using some of the smaller labs, like LabCorp and Quest to get their labs done, instead of bringing patients into the hospital, where there is more at risk, a much higher at-risk population. So yeah, I think things may be changing a little bit. Gail, things that you might be hearing?

Gail McCray:

So what we did was just try to find out how people were coping. And, of course, they had the usual list of cleaning, and decluttering, and reading, and listening to music. But I read something from health and human services that talked about how all of us could cope much better with this, and it goes for the general population as well as myeloma patients. And we did talk about the importance of movement, physical activity and good nutrition. Those things boost the immune system. And so that's part of what we should do, another thing was getting adequate rest or sleep. Another couple were, there were like six tenets and not smoking was included, and limited alcohol consumption. But the sixth one had to do with social connectedness and keeping your social connections, this again, general population.

And I think I would add to that meditation or deep breathing, and practicing those things as you get more anxious, then take yourself out of that space. And we did go through some relaxation exercises while we were in the meeting on Saturday, in the virtual meeting. And I think that worked very well. All of us have to be thoughtful and creative about the way we approach this, and keep our antenna up, and not do things sort of by rote but intentional with every step.

Cindy Chmielewski:

Exactly. So you just burst my bubble. Every Friday night, I have a virtual happy hour with my girlfriends, having wine during that virtual happy hour.

Gail McCray:

Not a problem.

Cindy Chmielewski:

Limiting my consumption of alcohol. I now maybe need to have some apple cider. Well, actually we're going to be doing a pajama party.

Gail McCray:

It didn't say no alcohol. It said limited, so you know?

Cindy Chmielewski:

My glass of wine on my virtual happy hour.

Gail McCray:

Yes.

Cindy Chmielewski:

We're going to do a pajama party next time I think.

Gail McCray:

That's great.

Cindy Chmielewski:

So we're thinking of creative ways. Jack, I have a question for you. I know I've been hearing a lot from some of the patients that I've talked to. They're concerned about clinical trials, like staying on protocol, being kicked off the trial if they don't make that trial visit or get that trial scan. Do you have any insight into that? I know you're on so many committees.

Jack Aiello:

So my understanding is the FDA has been a little bit more lax in enforcing some of the rules and working with the local committees and PIs that are involved in these trials. But it really depends on the particular trial. There are variations allowed for some trials, and there are non-variations or stoppages of other trials. The FDA also follows accruals very carefully. And accruals certainly have gone down in trials, but I think they are being a little bit more open in terms of not canceling trials due to lack of accrual, but rather extending those accrual timeframes. So each trial's individual. I'm sure the patients who are on them already will hear about it from their administrators, in terms of where they're going. And in terms of patients who are considering entering trials, there are going to be issues there as well, but it will vary with the trial.

Cindy Chmielewski:

Okay. Thanks. So I'm sure we could stay here for another hour or so just chitchatting and talking, but I guess it's time to wrap up our discussion here. And before we say goodbye, maybe one final thought to the people who are watching our program. Gail, what do you think? Final thought?

Gail McCray:

I will just say consider your immune system, keep your immune system strong. Laugh a lot, that helps. And those six tenets, do some physical activity. Move every 30 minutes. Get up and do something, get up and move. It doesn't matter what you do, just move. Keep your nutrition strong. I think most of us know how to do that. And those other four tenets, stay socially connected. And part of that connectedness means doing something for somebody else. And so check on someone; family, friends, support group member. I think we'll all be better off for it.

Cindy Chmielewski:

Maddie, how about you? Final thoughts?

Maddie Hunter:

So, I would say that, building on, Gail, what you just said. I think this is an amazing time for us to be taking a look at our capacity to ask for help too and for asking for support. So yes, giving support is really important, but some of us are in a position where we really need help now, we might need help getting food, groceries, maybe even to get out of our home and go walk and exercise like you're describing, Gail. It may be that we need to ask friends to help us with that. So I think this is an important time, and for many of us it's hard to ask for help. Myeloma has sort of enabled us to have a reason for that. And I think the virus on top of that, I would say this is a prime time.

And the other thing I would say is that, I think this is a really important time for all of us to reflect on what really is important to us. I mean, we're spending a lot of time in our homes. And it gives you time to just have family conversations with what's important. How do we want to live our lives, what does a good quality life look like for us with myeloma? And I would just say grab the time to do that and reset that for you as an individual and with your family.

Cindy Chmielewski:

Thank you. And, Jack, your final thoughts?

Jack Aiello:

Just like we do with myeloma, stay educated about COVID. There are lots of good resources out there. Check them frequently, because recommendations are changing. And having experienced already a couple of happy hours via conference call, I say they work as well and enjoy.

Cindy Chmielewski:

Thank you. So thank you everybody for being with us today. And this is Cindy Chmielewski from Patient Power, also known as the Myeloma Teacher. And remember that knowledge can also be your best medicine.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
 
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