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How Does Life Change After CLL?

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Published on January 30, 2020

Chronic lymphocytic leukemia patient advocate Al Hollis and his wife Teresa share their perspective on the changes that follow a cancer diagnosis and treatment. Watch to hear Al and Teresa discuss the ways they adapted to a new normal and shifted responsibilities at home to make it more manageable for the family.

This program is sponsored by AbbVie Inc., Genentech, Inc. and Adaptive Biotechnologies. These organizations have no editorial control. It is produced by Patient Power, and Patient Power is solely responsible for program content.

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Transcript | How Does Life Change After CLL?

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.

Carol Preston:            

Al, you have been a CLL patient, remind me again how many years for?

Al Hollis:                   

Just slightly less than two years.

Carol Preston:            

Slightly less than two years. You’re a newbie! 

Al Hollis:                   

Pretty much.

Carol Preston:            

So, in the last two years, because you’ve said I’ve always been a very healthy person, very active; how have you been living your life? What has changed? And what has not changed?

Al Hollis:                   

That’s a good question. Rewind back to 2017 into at least the first half of 2018; I’m very, very physically active; I was running 10 to 12 miles a week, I was doing 75 to 100 miles a week on my bicycle, and I was in the gym twice a week. And so, we were moving along, and things were going great, I was feeling great, feeling awesome! And then you get the C diagnosis and your jaw drops, and you think I still felt pretty darn good. Well, the wheels came off about mid-year, and I thought okay, let’s get through this, let’s get this stuff done, let’s get through this treatment so I can get back to what I was doing before.

And I guess that’s probably been the biggest disappointment is that the distances and the time—because I was running at the top of my age class on 5Ks and 10Ks and you know anybody that does 100 kilometers, or 100-mile bicycle is pretty amazing. And I was really feeling good about all that; post-treatment let’s go through—let’s get through the eight rounds that I went through on treatment. I’m thinking, okay I’m through this, and we’re ready to go. Well, today, and my last treatment was in April, I’m still able to do the things that I did before but not the times or the distances. So, I’ve had to step back and say, okay this is the new normal.

What was normal was all those many miles and distances and hours in the gym. I’m having to adjust to a new normal; cycling is about a third of where it was before; if I can get out and run two miles at a time, I’m good. Physically I’m good with that, and I’ve had to make that physical adjustment by saying okay; life’s different now, but in many respects it’s not different; it’s just a new normal. And so, as I get used to a new normal it is getting better. And I can continue to push myself physically, mentally, and emotionally, but I have to realize I step back some and say okay you may not advance you may not make the giant steps that you might have been able to make before, because it’s a new normal.

Carol Preston:            

So, tell me as the care partner and as Al’s staunchest patient advocate what was whirling about in your brain when you heard this diagnosis, and you were starting to learn about this disease and how to manage it.

Teresa Hollis:            

Well, I guess my first thought was this is what we have to face, so we need to reorganize our responsibilities so that I can take more off of his shoulders and make life easier for him. 

Carol Preston:            

So, what were some of the things that you did? How did you reorganize? 

Teresa Hollis:            

The first thing we did, we were living on—our home was on a acreage lot, and there’s a lot of maintenance for that; and he found out in February, I guess, was the official diagnosis, so by the end of February I had a realtor lined up, and I said we’re selling this place, we need a smaller environment that if I’m the only one doing everything I can do it. So, a year later, we had accomplished that, and now we’ve been in a smaller property that’s now been just a year, so that consumed quite a bit of my time, which was healthy for me to stay busy, so I wouldn’t keep thinking. Because I had just retired, I was retired two weeks when he came home and said, well, you know, I got a problem.

So, what I thought I would be doing in my retirement was different, but I felt like there was a purpose to it; so it gave me motivation to do it. The other thing, I guess I was trying to figure out because he’s not a shy person, and very active—how I can grab hold of the tail of the hurricane and help him accept that we are going to have a new normal; that we are going to have slower days. And accept that it’s okay that people know; because that was something—he still was working and didn’t think it was a positive thing for everyone to know that information. And even our children, he was reluctant to tell anyone.

I said, well, you know, it doesn’t mean they’re going to treat you differently, and we may find some support there. And, in fact, that’s what happened; and I think it’s a blessing for us having had told our children it’s given them time to adjust to the fact that this very patriarchal person in our life is going to have days where he’s a little off his game.

Carol Preston:            

Was your family involved in care, or were they? Was it just their we’re going to support you whatever you decide to do; or did some things change for your family as well? Your kids in particular.

Teresa Hollis:            

I think probably they were kept at a distance, that was his preference. I went with him for all of his treatments, our daughter usually called, because she knew where we were that day; she was how’s he doing did he get—but as far as them coming with him back and forth, or any of that, he didn’t want them to be involved, to worry. That was his concern that if they saw him off his game they would worry; so he still, from the very beginning, no matter how bad he felt, if they would ask him—we could have a houseful of people with children screaming all over the house, and he’s just sitting in a chair oblivious to all the activity, and they’re going to be is he okay?

What’s wrong with dad? And I said well go talk to your dad, they would say how are you, daddy, he’d say I’m fine, I’m great no problem, everything’s good. So, he never really shared with them what I knew.

Carol Preston:            

And so, Al, if you had it to do over, might you share more?

Al Hollis:                   

Yeah, I think so. The more you’re into the new normal—the more I’m into the new normal—it’s really not a scary thing, it’s not a death sentence, per se. So, the more people that you get involved, the more I’ve gotten folks involved in the overall process; not the day-to-day stuff but letting them know hey I’m doing good, the treatments are working well, I’m feeling good, I’m past my treatment, everything is cool. And it’s surprising how many—and for me, I’m pretty stoic in that regard—it’s surprising how many people that are on your team that you don’t know that are there. And once you kind of turn that corner and maybe relate some of the things that you were going through; it’s amazing how many people have been through something similar.

Or they’re unbelievably supportive of what’s going on with you, and they’re constantly saying hey, how are you doing? How are things happening? And you know, it doesn’t get old—it really does—I think it does after they continue to ask you over again how you doing? I don’t mind that because whenever a friend says how are you doing, they really mean it; and they’re really sincere about wanting to know. So, yeah, here I’ll probably, in retrospect, I would do that part of it differently.

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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