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Coping With Cancer As a Couple Amidst Coronavirus

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Published on May 11, 2020

Key Takeaways

How do you cope as a couple during the coronavirus pandemic when one of you is immunocompromised? In this program, two chronic lymphocytic leukemia (CLL) patients and their spouses compare strategies and share what works for them.

Patient Power Co-Founders Andrew and Esther Schorr are joined by Mark Silverstein and Nelia Pacheco. Mark and Andrew, who are both living with CLL, share the patient perspectives, while Nelia and Esther discuss their experiences as care partners. The couples talk about communication, sheltering in place, virtual support groups and more. They also answer questions from our audience. Tune in for a conversation filled with hope and practical tips for coping with cancer as a couple.

[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 | Coping With Cancer As a Couple Amidst Coronavirus

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.

Recorded on May 5, 2020

Andrew Schorr:
Greetings from Southern California near San Diego. I'm Andrew Schorr.

Esther Schorr:
And I'm Esther Schorr.

Andrew Schorr:
Thank you so much for being with us. We are doing this program as a couple. How come? Because there are couples issues for people certainly dealing with cancer. Joining us from Toronto…

Esther Schorr:
…hello up there.

Mark Silverstein:
Hello.

Nelia Pacheco:
Hello.

Andrew Schorr:
Mark Silverstein and his partner Nelia Pacheco. Thank you so much for being with us. Now, Mark, you are up there in Toronto, and you've had quite a go since 2010 with cancer. Maybe you could just describe that briefly and also how along the way you became a licensed psychotherapist to help people with cancer.

Mark Silverstein:
I'll keep it very short. In 2010, I was diagnosed with SLL. I went through six cycles…

Andrew Schorr:
…which is a leukemia.

Mark Silverstein:
Yes. Sorry. And after that, I really had some challenges after going through treatment, and I had some emotional challenges and it was just the whole, as I always say, you have your game face on during treatment. And then it all stops and everything just—it becomes a storm, an emotional storm, so to speak. So I sort of went into trying to find a place to help myself. And I did.

And it turns out the person who ran it thought I'd also be a great therapist myself. And so that began my journey and with the help of my beautiful wife who supported us through it, I went back to school and became a psychotherapist. In between, I started relapsing again in 2014, went on to ibrutinib (Imbruvica) early 2015. And that lasted for a while.

And then 2016, I started relapsing again and wound up in the hospital for two, three weeks, really sick. Started venetoclax (Venclexta), and it started working finally and in March 2017, and then I went for a bone marrow transplant, allogeneic bone marrow transplant in November of 2017. I relapsed again about 13 months afterwards.

So I started relapsing in December 2018, wound up back in the hospital again with hemolytic anemia, and my counts were doubling almost every week. So it was kind of like, "We’ve got to get this under control almost immediately." I also had two donor lymphocyte infusions, which is kind of like a top up on your transplant and went back on venetoclax, and that's kind of where I'm at right now. So far, knock on wood, I'm okay so far, and things seem to be going well for now anyway.

Andrew Schorr:
And we should mention that along the way, you counsel other patients, you run a support group that you're going to start doing virtually. And Nelia has been by your side for many years all through it.

Mark Silverstein:
Yep. Nelia and I have been together for 20 years—we have about almost half of that time I've been sick.

Esther Schorr:
So I have a question for you, Mark. You talked about a very complex journey with your treatment in that. Would you say that getting involved in this profession of counseling, has that been a coping mechanism for you?

Mark Silverstein:
It has certainly helped. There's absolutely no doubt about it. Actually the group that I had mentioned before that I kind of went into after treatment, I've actually co-facilitated for the last six years with my mentor. And I can't tell you, it's been at least twice that I've found that I was relapsing, and I had that group the following day.

And so I would go in there, and I'm not feeling great about relapsing. But you know what, when you're helping people, it helps you transcend your own challenges. And so between that, and I've worked with some palliative care individuals to the end of their lives. And so it's hard not to feel grateful even though everything I've been through, it's always in this house. It could always be worse.

And so let me be grateful for what I do have as opposed to what I don't have. And that's kind of the rule of our house that we try to live by.

Andrew Schorr:
Now, Nelia, so layered on top of the uncertainty that Mark has had, and you with him, over several years now on what the next day, the next blood test is going to bring is the uncertainty of the coronavirus in Canada as well as in the U.S. and around the world.

So really the focus of this program is layering that uncertainty on top of everything else. And you have kids, and do you still have a job, and do you have income and government policies and everything? How have you been coping?

Nelia Pacheco:
It's being in the world of CLL and dealing with Mark's cancer, it kind of prepared us for it in some ways. When Mark was going through FCRwhen it was the first diagnosis, we had to be so careful who we allowed in our home. He was often in a mask. He had his own challenges and his own concerns. And so we started out already kind of managing our lives that way to a certain degree.

And having to ask those questions, having to have things that other people normally wouldn't, people not going through a cancer treatment or having their immune system as compromised as one does with CLL. So it was kind of that. So when this was all starting to happen, we kind of just, again, we sat back, same way as we approached Mark's diagnosis, try to find out as much as we possibly could.

We certainly believe in what we can control. That's what we own, what we can't control, you really do have to surrender, because it'll just drive you crazy to a certain degree. So it's always been kind of our approach. Let's step back. Let's assess it. Let's see what we can control and what we can't, and do our part.

Esther Schorr:
You have just described the process that's gone on in our household as well. For people who know Andrew and Esther from the work that we do, they probably know that Andrew is the more quiescent calm person, and I tend to be more high-strung. And I'm the first one to admit that. And when this happened, my reaction was, I was surprised that it was more like what you described, Nelia, than what it was many years ago when Andrew was first diagnosed.

That was like, "Oh my God." And this time, sure, there's anxiety, there's concern about what's next. And I've heard a number of cancer patients and their care partners say this, it's almost like we're a couple of steps ahead of everybody else. Because he's already been through the aha moment of, "Wow, there's something that's going to be in our life that we can't control. We can just control certain things of how we react to it." So does that kind of describe what we've been through?

Andrew Schorr:
Yeah, absolutely. And one day at a time, so for folks, some of our folks, Mark and I both have blood cancers. So when Nelia was talking about FCR, that's combination therapy for the leukemia we've dealt with and some of the drugs that Mark mentioned. But no matter what your cancer journey or your partner's journey is, there may be medicines you take that are oral and some that are infused.

So like today, I'm going through infused medicine. I'm saying that's important and that they're going to protect me. The clinic, the hospital, has really been working on cleaning. Everybody wears a mask. Esther doesn't get to go.

Esther Schorr:
And that's kind of a bummer, because I have been going before coronavirus happened. That was kind of a, “I can be there to support Andrew,” and I've had to kind of let go of that. This is safer for him and for me and for other people in the infusion center for me not to be there.

Andrew Schorr:
Nelia, do you work on alone time? In other words, for you to recharge your battery, for you to do something that's important to you rather than it's always about Mark and cancer and uncertainty with the pandemic, how do you restore yourself?

Nelia Pacheco:
Exercise for me, just going to the gym. I do like yoga, I like the meditation. I also like to write, and that kind of helps. But when it all started again, even before we started having restrictions in Ontario, before the gym closed or shut their doors, I also stopped going, because I was just in my mind, it's just not worth it.

It's not worth it to Mark. It's not worth it to our family. It's like Mark says, "This is not going to get me, after all everything I've been through." So you kind of start understanding that. So I just started making more time for myself at home.

Esther Schorr:
One of the questions that somebody sent in ahead of this program was that they have a similar situation to our two couples where one is at more risk from what we understand medically, and she's having the issue of explaining to other people why she's made the decision to shelter in place as well.

They've taken the approach, they're both going to not go anywhere. And I know there's kind of a range of decisions people are making. So I guess it's kind of a two-part question to ask you guys, and I'd be curious what you think, Andrew. Is like, okay, you can make the choice that both people do that or one goes out and does things. But basically how do you explain to people who aren't going through this same second layer of concern? How do you explain to them why you're doing it, and do you need to explain to them?

Mark Silverstein:
We're trying to be respectful of everyone. Just like we want everyone to be respectful of us, we're trying to be respectful of everyone, and let's just kind of get past this. And if we all kind of as a community do the right thing, hopefully we can all come out of this—most of us anyways. I know some people have succumbed to COVID and stuff.

But at least most of us can come out of this in one piece, and that's really the important part of it. It's community versus individual, the individual, which is kind of where our state of culture is. It's kind of brought back the concept of how important it is for community to kind of be together and be on the same page, which is kind of—it's nice.

Esther Schorr:
Well, yeah, and I also think that there's a heightened need for respecting other people and how they are managing through it. I've had to keep myself from judging how other people are managing. I'm not a judgmental person in that regard, but in response to this person's question, I don't know that you need to explain deeply to other people why you're taking the approach you are, because that's your way of coping. It's just a mutual respect, which is what I think you've been saying, Mark.

Andrew Schorr:
Mark, one of our viewers want to know with these COVID-19 issues going on there in Toronto, are you facilitating your support group remotely? And if so, how's it going?

Mark Silverstein:
We certainly skipped the last couple months, but we are scheduled for next Monday to try to pick it up, and we're using Zoom, and we're going to see how it goes. So yes, we're planning to move ahead. I think especially at this time, it's actually very useful. I'm hoping everyone will appreciate within our group actually kind of putting it back on and discussing everyone's strategy and how they're managing this. And people can give each other advice, et cetera. So I think it's really important, and I'm really happy to kind of get it back up.

Andrew Schorr:
So two things we wanted to say is communication. Mark, I'm sure you can underscore this. Communication is so important. What are you feeling? And the other is there are resources, there are resources. We've done some other programs. Now there are financial resources, particularly for people on certain medicines. Maybe the drug company is helping you. Are there foundations that can help you with financial support or even groceries or things like that?

And there are people who can help even bring the groceries to you or pick up things for you or whatever. But, Esther, did you have a comment about communication?

Esther Schorr:
Yeah, well, and I think communication's kind of the umbrella. But I know from talking to other people and from some of our experience that not only things like what you're doing, Mark, with kind of peer support, but also just outreaching to community whether it's spiritual guidance or just reaching out to neighbors or being willing to accept help and comfort from family.

I know there are a lot of people who feel like that's a weakness to ask for help. But more than anything right now, I think that people need to need each other and feel okay about asking for help and support. And I know that that's difficult to do for some people, but I think it's really critical. I know that there are a lot of psychotherapists and counselors and social workers who have converted their practices, for example, to telemedicine.

And we'd like to do what we can to make it clear to people that those services are available, whether it's through some of the overarching patient support organizations or through your clinic or hospital and medical center to get connected with people who professionally can help as well. So I think that that's a good way to cope too.

Andrew Schorr:
So any tips from you?

Mark Silverstein:
Any tips? I took all my clients in place, people in my support group in separate emails, but I sent information on how to manage stress, how to kind of be okay as much as possible within this situation. It's really important. I found at the beginning of this whole thing, I was kind of watching the world meter, and every couple of hours I check in, and it'd be like exponentially this and exponentially up there.

And I found after several days I really noticed that I was actually stressed, which makes sense. But the problem is you read that, and it's like, "Oh, my God." Especially when you have an immune-compromised person, the fear is reasonable, it's a lot more reasonable anyways. And so all of a sudden, you're in fight or flight mode all the time, because you're looking at these numbers.

And then you look at it two hours later ,and you look at it two hours later, then you look at it first thing in the morning. And so I actually stopped doing that. I could still understand what's going on without actually looking at the numbers. So it made sense. So instead I started to focus as I have with my CLL on just understanding it, understanding what they're trying to do treatment-wise.

I know right at the beginning when the first few times, hydroxychloroquine (Plaquenil) was brought up in a conversation way before President Trump did. I already told Nelia that if I'm in the hospital and I'm not conscious, make sure they get this to me. So it's a matter of understanding once again, just like my CLL, within this uncontrollable situation, what choices do I have, and how can I figure out to make those happen?

And so that's part of it for me. But I do think once again, part of the reason I wanted to put this support group back on is, because I'm sure people are—here's a whole bunch of people who have CLL. They're all immune-compromised. And I have no doubt, just like most people who are immune-compromised or much older people who are part of the high-risk group, there's fear and paranoia.

And so how can we calm them down, and how can we give them tools and strategies to manage it better? I think that's at least from my perspective, what I can do, that's what I can do. Other people can do other things that they're good at. That's what I'm good at. And so that's what I've tried to do as much as possible.

Andrew Schorr:
I wanted to just say what you touched on, and I think what you were just doing, and that is how important is it to express gratitude for your partner? Okay. Because we have these routines. You guys have been together like 20 years. We've been together 35 years, so you can get into a rut, but now there's the added stress of saying thank you. Just maybe comment on that.

Nelia Pacheco:
Yeah, no, absolutely. Absolutely. You said it earlier, we're very fortunate too. We've got our home, we've got outside space. If we want to go outside and just to be in the sun when it decides to come out here, we're not quite in sunny California. We're so appreciative of that. We also have neighbors who have all left little posted notes on our door, "If you need anything."

On the weekend, it was a nice day. A lot of people were gardening, and we live just outside of Toronto, so it's not as dense in the population. So we have a little bit more space for social distancing. And you know what, it's the same thing. Our neighbor, she was running out, "Can we get you anything?" And you do. You really have to be so grateful for that support, and again, and we're in our home. We're safe.

Esther Schorr:
Yeah. I just thought of one other thing that you can bring your family and your support system to you. We're doing it through technology. One of the things we look forward to every Sunday afternoon is we've got 15 or 16 of our family members who are, in this case, the most of them are in Southern California, but we could certainly include ones from farther away, and then we all get on for a half an hour to 45 minutes and we share what's happened the week before. We have a year-and-a-half-old granddaughter who I'm just itching to hug.

Mark Silverstein:
I can't imagine.

Esther Schorr:
And I can't. But she's on, and she's mugging for the camera. And so I think another coping mechanism is to whatever extent you can use technology to bring people to you and bring yourself to them, I think is another way I know we've been coping and not feel so isolated.

Mark Silverstein:
Which is another way of bringing meaning into your existence in this situation.

Andrew Schorr:
So, Mark, as we get to the end of this, you kind of touched on it. You've had tremendous uncertainty on your cancer journey more than me, I think. I've been more chronic, but you've had some very acute times. As you said, at one point, your immune system was down to zero.

Nelia Pacheco:
Nonexistent.

Mark Silverstein:
Yeah. Basically nonexistent.

Andrew Schorr:
And so really you talked about kind of living in the moment and that's what I wanted maybe to wrap up with. All of us who are dealing with cancer in our support system as part of it dealing with it with us. We don't know what, any of us could get hit by a truck, which everybody always points out, but you certainly have that very clear and present worry when you have a cancer diagnosis.

And then we have this vulnerability to this very scary virus on top of that. It's invisible. We don't know where it's going to come from. So how do you look at each day, and what would you coach people on of looking at each day? Maybe even each moment.

Mark Silverstein:
Number one, I would go back to a bunch of different things, if you're lucky enough to be somewhere with someone, communicating with them, that's really important. Number two, try to find meaning in what you do in a day. Try to find something meaningful for yourself every single day, because it feeds you. That's what feeds people's spirit, and that's what kind of keeps them calm.

And so that's really important. Between psychotherapy and CLL, I've learned that I have little control over my situation in a lot of ways. So it's only the choices I can make in those situations. And so I've learned a lot from both that kind of when this situation presented itself, I was already equipped with most of what I needed to deal with it.

I'm grateful, but I'm not grateful, because I've had to go through a lot to be to that point. But the fact is that once again, if you're worrying about something in the future that you might get sick, you're not in the present. If you're worrying about the fact that, "Oh, my God, I wish this wasn't the way it is," then you're in the past, because it isn't that way.

And so the only way to be present is to neither be in a past and just kind of focus on the now. That's all that's really—and in the end, I think, Andrew, you feel, I'm sure you both feel the same way, it's this moment that counts, because I don't know what my next moment it's going to be like especially with CLL and especially how aggressive my disease is, et cetera, et cetera.

So, this is it. And so let's just enjoy it for what it is, and once again, there's something that I kind of practice, it's called non-attachment. And it's just kind of like, I can't emotionally attach myself to this situation, because once again I have no control over it. And so, I need to just be with it and be okay with it and just figure out a way to manage myself within those confines.

Andrew Schorr:
Well, what we can do now as we wrap up is we can hug our partner.

Mark Silverstein:
Absolutely.

Andrew Schorr:
Okay. We're allowed to do this, and this is safe.

Mark Silverstein:
One of my favorite things.

Andrew Schorr:
Yeah, it is. It is. Nelia, I hope you get to hug your kids sooner rather physically rather than sometimes…

Nelia Pacheco:
I hope so too. Looking forward to it.

Andrew Schorr:
...drive by. We want to thank Mark Silverstein, Nelia Pacheco for being with us from Toronto.

Esther Schorr:
Thank you, guys.

Andrew Schorr:
Thank you so much.

Nelia Pacheco:
Thank you. Thank you so much for all of this.

Mark Silverstein:
Thank you for inviting us. I hope you guys…

Nelia Pacheco:
Be well.

Mark Silverstein:
...be well and be safe.

Nelia Pacheco:
And be safe.

 

Andrew Schorr:
Thank you so much for joining us, and as we always like to say, knowledge can be the best medicine of all.

Esther Schorr:
Knowledge can be the best medicine of all.

Andrew Schorr:
We'll see you. Bye-bye.

Esther Schorr:
Bye.

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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