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Facing CLL With Faith and Hope

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Published on December 2, 2019

How do people keep the faith after the curveball of a cancer diagnosis? This Partners program features a panel of chronic lymphocytic leukemia (CLL) patients and a Christian life coach discussing how to face cancer with faith, and coping strategies that encompass your spiritual, mental and physical health. Watch as the panel describes an encouraging shift in perspective during a challenging time, why it’s important to allow yourself to grieve and their steadfast refusal to impose limits on life because of cancer.

This program is sponsored by Pharmacyclics. This organization has no editorial control. It is produced solely by Patient Power.

Featuring

You share your lives, your thoughts, your time. I am overwhelmed by all the help I have received to help me understand this disease. I can't thank you enough!

— Mary Ellen, CLL Survivor

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Transcript |

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.

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.

Jeff Folloder:

We are here to discuss the idea of hope when dealing with CLL. Patient Power is putting on this program. Our sponsor is Pharmacyclics. The thing that I would like to make abundantly clear is Pharmacyclics has absolutely no control over the editorial content of what’s going on with this production. So, you guys are welcome to discuss anything you want to talk about. There’s no restrictions, no bars, no nothing.

So, each of us here on this discussion is dealing with cancer. Some of us are dealing with cancer in a general way; some of us are dealing with a very specific type of cancer, chronic lymphocytic leukemia. Each of us has gone through a very individualized journey that hope has played a part in. So, I’d like to start off with Jay. Jay, if you would introduce yourself and let us know about how you got to be here at this moment and what that journey looked like.

Jay Connolly:             

Absolutely. My name is Jay Connolly and I live on Vancouver Island on the far west coast of Canada, and I had a bit of discomfort on my left side in 2011. I was about to go on a holiday to Colorado, so I went to my GP and he was quite concerned through some blood and told me a few days later that I had either lymphoma or leukemia. I then went quite quickly through a series of further tests with a hematologist and was diagnosed with stage IV chronic lymphocytic leukemia in July…

Jeff Folloder:             

…and how’d that go over?

Jay Connolly:             

Well, it was terrifying. I was absolutely terrified. I was raised with traditional sort of male values and I hadn’t wept for many years, and I went home and I was surprised, but there was just this release of tremendous grief. Both my wife and I felt this. It was just devastating, and the word cancer—we’ve all dealt with lots of people and lots of sadness around this condition in its many forms and so I just sort of emotionally collapsed. I wouldn’t say I felt depressed, but I always refer to it as a mild depression, and that mild depression probably lasted a whole year because I did not have any hope at first.

I wanted to be a good patient and cause as little trouble, and I didn’t want to go through the stages of grieving, so I just tried to jump straight to acceptance. And to me that meant that I just had to allow the disease to run its course. I mean, of course, I was going to be treated; I just didn’t think the treatment would be particularly effective. I had a couple of negative markers, so I just looked at this as a very limited future and I thought it was the manly thing to do to accept that limited future and just sort of ride it out.

And it was when I was having chemo that the—my first session was a very difficult six or seven-hour affair and they had to keep pumping me full of Benadryl and Tylenol to keep the allergic reactions in check. And I had the rigor all day long and I was exhausted by the end of it. It wasn’t six hours; it was nine hours. It was 9:00 in the morning until 6:00 at night and it was supposed to take a couple of hours, but because of my reactions it took so much longer. And the chemo nurse, at one point, looked up at me and she said, “I know this is hard, but it just means it’s working,” and I just kind of began to sob.

And it was in that moment when I finally allowed myself to hope, to think, “Hey, maybe there’s a way through this. Maybe it’s working and maybe this is going to—maybe this treatment is going to be very successful.” And I had been reading things about Imbruvica and I had been reading about CAR-T therapy, which was just in its infancy at the time and I started to think, “Well, you never know. This treatment’s working and maybe there’ll be another treatment. I mean, I know there will be another treatment when the time comes.”

And so ever since that moment, my whole approach has been about hope. I’m aware that any number of bad turns could occur, but I’m also aware that there’s some possibility that I could live to be an old man. And so, really, that’s the way I approach it is that that’s my intention and I understand that there are any number of factors that could change that, but I choose to be as optimistic as I can and as hopeful as I can day to day. And I really try to kind of propagate that attitude with everybody I deal with.

I’m a teacher, and so kids help me with the whole notion of hope because they’re all about the optimism for the future and they can look around and see any number of obstacles in their lives, but they choose hope and so that’s what I do.

Jeff Folloder:             

Pat, I have a question for you. 

Pat Weatherspoon:     

Sure.

Jeff Folloder:             

Because as I was listening to Jay speak I was thinking about how I dealt with my initial diagnosis and my run up to treatment as it were. And like Jay said, you have typical male response. You get your cancer diagnosis, if you’re a type A personality, you take charge and everything becomes a punch list of things that you have to check off, things that you have to do, things that you have to make happen, and you have to take care of everything, and you’re not allowed to let go. 

I know from your work that getting people to understand what’s going on and to allow themselves to be healed, it’s an important breakthrough. It’s a breakthrough that each of us has to go through. Tell us how you help people get to that point of letting go and becoming connected to what’s going on. 

Pat Weatherspoon:     

Right, right. So, for me when I’m working with either a client or someone who’s going through a diagnosis or even a caregiver, it is, first of all, what is it that they are wanting to gain out of the situation? We’re talking about hope and spirituality and I believe we all are spiritual beings. Now, with that being said, a lot of people connect spirituality and religion and Christianity. I happen to believe in Christianity, whereas someone else may believe their spirituality is in the universe. 

So, we all believe in something that offers that hope for us. We’re all—when we are diagnosed with an illness or something that’s detrimental to us, we start thinking about our meaning—meaning of life. Where are we going? How are we going to get there? Different aspects such as those, and where I come in is that I come in and help them reach those goals. If they want to—you’re diagnosed with cancer and so you want to beat the cancer. You want to have hope, and so what does that hope look like? And that’s where I come in.

Some people go to meditation. Some people have that release and I know my husband has also talked about that. Growing up as a male, you don’t get to get that release, but crying is cathartic. It releases tensions, and so when you’re searching for spirituality, releasing that tension, finding hope, finding what life means to you, and how you’re going to live the rest of your life in dealing with a chronic illness or a situation, that’s what I’m there to help them with.

Jeff Folloder:             

One of the things that I heard Jay say and that I heard you say, Pat, we all get to a certain watershed moment. Everyone that goes through a cancer diagnosis, everyone that goes through chronic lymphocytic leukemia, everything happens really, really fast. Some of them are painful, some of them are difficult to deal with, but at some point we get to a moment where we realize, “I have to figure out what it is that I want.” And when I was reading through Jay’s information and Elizabeth’s information, the answer is, “I want to live better,” and I think Jay and Elizabeth will—I see them both nodding right now, so I think I’m getting to at least a little bit of a point.

And how we live better often involves letting go of our grip just a little bit. Elizabeth, I’m looking at this list in front of me about how you retired in 2011 and had varying cancer diagnosis. You got an awful lot on your plate. How did you get to that moment of, “I can get better”?

Elizabeth Dechen:     

Oh, yes. Well, the thing with me too was I had ovarian cancer 10 years before my diagnosis of CLL, and I went through the chemo, six months. There were times that I thought, “I can’t go through it,” but you get through it. My husband kept telling me, “You’ve got to go for another chemo treatment, as sick as you are,” and I did get through it. And then, lo and behold, I go to my hematologist for my checkup to make sure my blood work is okay and I don’t have another ovarian cancer scare, and I find out that my lab work came back and it was not what they expected. And I did further testing and then they found out that now I had CLL.

When they told me I had chronic lymphocytic leukemia, my first question was, “What is it? I never heard of it.” It’s not a common cancer. I mean now, of course, with listening to people and educating myself, but at the time it was like the big C again and I was just—I was shocked. I was just—I thought, “Who gets cancer twice?” But then again, after I went through the initial surprise, shock, and looking online—the internet, I went online and looked at the internet to try to find out more about what I—what chronic lymphocytic leukemia was like –

Jeff Folloder:             

You broke the rules. You went and talked to Dr. Google.

Elizabeth Dechen:     

Yes, I did. I mean, I had to find out more about this cancer I never heard about and I know the doc—hematologist—when I went to her, she said, “Oh, get a book on the way out. It’s not the worst kind of cancer you can have.” Well, if you’ve had cancer twice, I don’t care what kind of cancer it is. It’s the C word. It’s cancer. There’s no—it’s a scary feeling. It really is.

So, anyway—so, I did a lot of research and I decided that I was going to go to a specialist, which I did, and then I was going to get a second opinion when I found out that I had to finally go for treatment. And I’m at the point right now where I still go to NIH every three months, but I’m at the point now where I’ve accepted it, I’ve gotten through cancer once, I will get through this again. For some reason, I don’t know why, this was given to me and I just have to accept it and move forward.

And it has made a difference in my life because I do exercise more. I enjoy things more because you realize life can be short. You’ve got to take those good moments and you’ve got to enjoy them. And so, I hardly ever really think about CLL, except when I go for my every three-month checkup just to make sure that I’m okay. I always get a little nervous before that, before I go up to…  

Jeff Folloder:             

You’re allowed.

Elizabeth Dechen:     

I’m allowed, but I really—I feel good and I feel normal. I think that’s the biggest thing. I wanted to feel normal again and I must say that with Imbruvica, I do feel normal again.

Jeff Folloder:             

So, was there one specific thing that moved you from, say, apprehension to being hopeful? To going from a negative mode to a positive mode?

Elizabeth Dechen:     

Reading other patients online. Connecting with them made a big difference. I mean, there were people online, the ACOR group that had CLL and they were living with it, and I think that’s really what helped me get through it was just hearing about other people that had CLL and they were still alive. Some were alive for many, many years because they did not have the acute or the very low dose of CLL or—And I just—the internet really helped me a lot in speaking to people too. Telling them that I was scared and then people responding to me on the internet. People I’ve never met.

Going up to NIH, meeting other people in the waiting room with CLL that had been going for many years, and they were still there. And they were still able to talk about their story and they were still living life as best they could. Was I scared? Absolutely. “Cancer again? No, it can’t be.” Yes, I was very scared, but I think talking to other people and realizing that I had gotten through it before and I can get through it again.

Jeff Folloder:             

Jay, I’ve got here in my notes a little bit about you talking about a reunion weekend 18 months after your diagnosis and one of your former students. Tell us about that incident. 

Jay Connolly:             

Well, it was just—yeah, I was at a reunion. We just had that reunion this past weekend again, and a student sort of saw me across the room and came over and just the first thing he said was, “Mr. Connolly, I thought you were –” And because he’d heard; the news got around quickly in a connected former school community that I had cancer, so people expect that to play out relatively quickly. So, I guess he was surprised to see me above ground and I said, “Yeah, I am—or no, I’m not,” and I always kid with the students and say, “What I should have said was, ‘Yeah, weird, eh?’” 

So, and that was good and I had this odd sort of guilt where you get cancer, so people expect to see you deteriorate. And I had my treatment and like both of you, I then really—not right away, actually, not for a couple of years, threw myself into a more rigorous exercise program and really enjoyed that. So, that was great.

Jeff Folloder:             

Pat, I’m going to tell you a little bit about some things that I do that you probably already know little bits and pieces of, but I’d like you to try to pull this together into a bit of fabric for us. When I was diagnosed almost a decade ago, I was middle-aged, I was in charge of everything. Life was good and it was on track and cancer knocked me off of that track, and, my apologies, scared the crap out of me and my entire family. And I did not know what was important and as I went through the two plus years of watch and wait, I realized that most of the things that I thought were important weren’t.

And as I went through treatment, I gained strength from knowing that I had changed what was important on my priority list. It wasn’t necessarily important to have all the stuff stacked up on my desk, all the counters of wealth and success. It was more important to be able to smile. Actually find something enjoyable to do each and every day, even when I felt miserable, and I felt miserable a lot.

How do people wrap their arms around—I hate the term the new normal, but how do they go from being scared, how do they go from being totally intimidated to a state of being able to extract the joy and the peace from what’s in front of them?

Pat Weatherspoon:     

I think it’s more—and I think I’ve heard it from the three of you that you’re in—as you said, because the phrase that was going through my mind was the new normal, even though you said you hate to say that, but that’s the phrase while you were talking that was going through my mind. And you’re dealing with the diagnosis, you’re going through the treatment, and you start thinking about how you want to live the rest of your life, as you said, and I think all three of you. The things that you thought were important before no longer fit into your life now, and so, you decide on what is most important to you now and you give yourself permission to do that.

One of the things, even when I was working for CanCare, when I would talk to the patients is that a lot of times they didn’t think they had permission to do anything. Because a lot of the times their fam—they were doing a lot of things for their family member, and so one of the first things that I would tell them is, “You have permission to feel the way that you’re feeling or to think the thoughts that you’re thinking, even though you’re trying to live and trying to do everything that your family member wants you to do. But you have permission to go through the emotions, decide on what you want to do, and to tell your family members that and your friends.” Because sometimes they’re afraid to do so.

And I would get such a joy in hearing that sigh of relief on the other end of that phone because it’s the first time that they’ve been ever—been able to release that information. And it’s the first time that they also decide that they have hope.

Jeff Folloder:             

It’s interesting because as I’ve gone through this not-so-pleasant journey of cancer, I’ve learned a couple things along the way. The first thing that I’ve learned is I now enjoy spending time with my daughters in the evening sharing their cocktail. It’s kind of nice. They’re both adult children now, but having them come—I look forward to them coming over to my house, sitting down, having a glass of wine, and just talking as human beings. I enjoy going to the grocery store and buying stuff that I probably shouldn’t spend that much money and sitting down and enjoying a bit of good cheese with my wife or—

Pat Weatherspoon:     

You know that’s coming out.

Jeff Folloder:             

Or having a reasonable portion of a really nice steak and then I take a deep breath and I realize I’m in a good place. My world is somewhat balanced and I’m going to pay for it by not doing six miles the next morning, I’m going to do 10 miles.

Pat Weatherspoon:     

But all of that ties into your spiritual being, your mental health, your physical health, and your wellbeing, so that all encompasses a wholeness within the person and I think that’s what you’re describing. 

Jeff Folloder:             

So, I see you smiling. I’ve seen Elizabeth smiling. I’ve seen Jay smiling. What advice do you give to fellow CLL patients who aren’t quite there yet? How do they get to a place where they can say, “I can breathe and life is good”? I realize I may have a port installed here, I may have an IV going, I may be taking a pill, but how do you get to the good place? Elizabeth, I’d like to start with you. Give me some good advice.

Elizabeth Dechen:     

Okay. No, for me it was finding the right doctor.

Jeff Folloder:             

Okay, good.

Elizabeth Dechen:     

The first doctor, again, said, “It’s the good cancer to have. There’s a book on the way out. Read the book. You’ll find it all about CLL.” Did nothing for me. I went home and I was more discouraged than ever, and then I found a specialist at Moffitt Cancer Center in Tampa, Florida where I live and he was so bubbly and so positive. And I just—and he spent a lot of time with me. Any question I had—I must have been with him—my husband and I must have been with him an hour, if not more, and every time I went to see him for my checkups, whatever, he was just so positive. And I knew he treated CLL patients; that was his specialty. 

And that really made the biggest difference probably in my life was his optimism and that—the hope that he gave me and just his attitude. I mean, he has a ponytail in the back of his—he comes from, I think, South America. He wears a ponytail, and he’s kind of offbeat as a doctor and loves his wine. He was just—I can’t explain it. I mean, I just—I love him. I really do. I don’t see him anymore because now I go to see a—go up to—for my clinical trials, but I think he was my turning point—was the doctor. And knowing—and believing in what he told me. I mean, I believed, and he sat down with me, diagrams, whatever I needed to know, he answered my question. And that…

Jeff Folloder:             

So, Jay, how do you get in your happy place? 

Jay Connolly:             

Well, I think it takes some time. That’s probably the first thing I’d—just as people have been saying, as far as where you are and I had to grieve first. And I really think I have lived a life of enormous privilege in the sense that I was able to have access to education without going broke, and I’ve had a job that is pretty much perfectly matched to my personality. I live in all the comfort of the Western world, and so that’s been a really big thing for me.

Jeff Folloder:             

You also get Tim Hortons instead of Starbucks. So…

Jay Connolly:             

That’s right. Lots of Tim Hortons, but we have Starbucks too. And so, recognizing that and, as you said, really focusing on the things that matter, the people that matter. One of the things that I did quite early on, I didn’t even try to do it, but I just stopped paying attention to the noise in life. And at any workplace, there’s lots of chatter, you’re going to hear a certain level of discontent. You’re going to hear more if you listen for it, so I stopped listening for it and I started concentrating—or rather, refusing to let the little things guide my day.

And I also developed this mantra, which was—sometimes when I’d get worried or frightened, I would say to myself, “Well, nothing’s going to happen today. Nothing bad is going to happen today and probably not tomorrow either.” And so, although I developed some fear about medium-term or long-term development of my disease, I started to say, “Well, yeah, that could happen, but not today and probably not tomorrow.” And it just allowed me to concentrate on what was in front of me and to apply that kind of hopeful lens to my life.

Jeff Folloder:             

Okay, Pat, you’re the expert. You’ve got a couple cancer patients that you’re talking to right now. Our lives do not go by a script and often it is the case that we get thrown a curveball. Hopefully, it’s a really nasty curveball thrown by Justin Verlander that strikes out another Washington National, but be that as it may, we’re going to get a curveball. What advice do you give to patients and clients about dealing with that unexpected curveball, that stuff that knocks us off our game?

Pat Weatherspoon:     

Dealing with the unexpected, that curveball, a lot of you—well, all three of you have mentioned what has happened for you after the cancer—after the cancer diagnosis. Not listening to the noise. Actually, what I would put into perspective with stopping and smelling the roses, with that phrase. Not listening to all of the negative things. The positive aspects. I think the doctor that was mentioned that had the bubbly personality, we kind of draw off of the energy of others, so when you surround yourself with other people who can be in your circle, who can provide some of that energy for you that you can thrive off of, that would be one way that you can manage that curveball.

Of course, when you first hear that news or that curveball comes at you, it can be devastating and, as someone said, you may grieve it even for a little bit and you have a right to do so, but only for a short period of time. And then you have to realize that life goes one, you have been diagnosed with this cancer and you have to figure out how you’re going to take those next steps and it’s up to you how you want to live that out.

Jeff Folloder:             

One of the most important lessons that I think I’ve learned in the past 10 years is learning the ability to put up the red card and say, “Stop,” or say, “No.” I didn’t used to do that. Everything that happened got dealt with, but it’s one of the things that I learned while I was going through treatment at MD Anderson that the nurses, the staff, your family can’t help you if they don’t know what’s wrong. So, when I throw up the red card and say, “Stop. This hurts. Stop. I’m having a reaction. Stop. I’m overwhelmed.”

I learned that that applied to just about everything in my life. It’s not just what’s dripping into my vein or being swallowed by a pill. It’s the things that’s going on around me. I have the right to say, “Don’t want to do this.” I have the right to say, “Stop. This isn’t working for me.” Elizabeth, have you dealt with that kind of shift change? “I’m important. I get to make some calls.”

Elizabeth Dechen:     

Oh, definitely. Definitely, yes. Even with my family, I have a tendency with my daughters to always say yes because they’re my daughters, and not to say that I would not help them, but I can’t always be at their beck and call. I have to—or even engagements, people may ask me to help them with something or to go out with them and I may not feel like it, and I don’t mind just saying, “I don’t really feel like going out today. I just want to stay home and read a book or whatever.” Whatever I want to do.

So, I do have freedom in saying no and it feels great. It really does. I mean, I tend to be a yes person and I always want to please others and I’ve learned that I need to please myself too. It’s important for my self-esteem to feel that I’m more in control because I really think that I want to be more in control than I ever was before.

Pat Weatherspoon:     

Right, and that sounds like also setting boundaries. I’m also big on boundaries, and so, letting your family members know what your parameters are and making sure that they respect those boundaries. 

Jeff Folloder:             

I hate to say this, but while both of you were talking I am reminded of the classic movie Dirty Dancing when they’re trying to teach each other how to dance and Mr. Swayze is trying to explain, “This is my space, and this is your space.”

Elizabeth Dechen:     

“And that’s your space.”

Jeff Folloder:             

And they can’t dance effectively unless they are mindful of their own spaces. I’m sorry, I realize that’s weak, but that’s all I thought about as CLL patients, as cancer patients, we do have to learn how to set those boundaries because the boundaries are what allows us to be happy in our own space. Jay, I’ve got three pages of stuff here and I’m just—I mean, I’m overwhelmed by what you’ve written and what you’ve gone through. And your whole concept of trying to—walking in one of those giant bubbles.

You’re in a new place and it’s a different place, but I’m looking at you, I’m looking at Elizabeth, I’m looking at Pat, and we’re all smiling. I mean, our doctors told us we have cancer. We all reacted normally, yet now we’re all smiling. How does that happen?

Jay Connolly:             

Well, I mean, people talked about the new normal and, like you, I hate that phrase. You have to—

Jeff Folloder:             

It’s a horrible phrase. It really is.

Jay Connolly:             

It could be really accurate and I guess that’s the source of its popularity, but it gives you perspective and it gives you a measure of wisdom over time, probably. Because when I hear you people talking, I’m just hearing people who’ve confronted a difficulty and all of us have used that to discover some perspective in our lives about what matters. And so, I think that, for me, that’s really the most important thing is in my life I kind of drop the chatter and the negatives, and I can get drawn back in. A couple of months ago, I was drawn in rather fiercely to an issue at work and I let it get under my skin a little bit, but then I really tried to let it go and move on. So, I think that’s what it is. It just gives you perspective.

We’re more fragile than in daily life we sometimes acknowledge and CLL forces you to realize, “Yeah, I’m not invincible,” and with that comes perspective and a decision to value the things that are genuinely important. My mother has always said, “When you really get down to it, when things get tough, it’s family that remains by your side.” And I think I took my family for granted for many years and I had started to do that less by the time I was diagnosed, but that’s really made a difference. To recognize that these people bring such value and love and kindness and faith into my life and that’s what I need to feel my gratitude for.

Jeff Folloder:             

One thing that I feel that I have to share with whoever is going to be watching this whenever it’s put together. Many years ago, I went through a CanCare training and Pat has gone through CanCare training as well. We learn how to work with cancer patients and caregivers one on one, and we learn about listening, and we learn about playing back what we’ve heard, and we learn about embracing what people have to say. And at the end of all of this training, we’re all standing together, and it’s usually a very emotional experience because you’ve gone through a couple of days of very intense training and each person is asked to speak about what they’ve learned.

“Just give us a few seconds. Tell us what you’ve learned over the past weekend.” And one of the things that come to mind right now is the thing that I said at the end of my CanCare training. We had people who were near tears, we had people that were in tears, we had a room full of people who had gone through cancer and come out the other side better than they started. And I realized that what I learned through CanCare training, what I have learned through working with Patient Power, working with patients, working with their caregivers, the most important thing is that hope is something that should never, ever be experienced alone.

It is very difficult to have hope by yourself, so if you want hope in your life, you have to open your arms and let people in, right?

Elizabeth Dechen:     

True.

Pat Weatherspoon:     

Right.

Jay Connolly:             

Absolutely. If I could just say to caregivers that my wife, her attitude has always been, well, that she wasn’t really willing to entertain the idea of me making early exit, so she just continued to talk about things that were going to happen in 10 years or 20 years. And I can’t tell you how much that meant to me, just that she was, on a principal of faith, she was assuming that I was going to be around for a long time, and that was—that has been very important to me. It doesn’t mean that she’s right, but it’s an attitude and it’s such an important attitude to attempt to live for the long term, but just to live for hope.

Jeff Folloder:             

Elizabeth, what can you add to this?

Elizabeth Dechen:     

Oh my goodness. Again, I feel hope is just so important, but it took time for me to get there. Having cancer the first time was scary enough with my ovarian cancer. And then two years later they thought that it came back and I had to go for more surgery and I was in the office and I had to say goodbye to everybody because I thought, “My life is over.” So, I’ve dealt with cancer, basically, three times.

The second time I did not have a reoccurrence of ovarian cancer, so to me—again, for me, it was like I’ve gotten through it before, I can get through it again. And if I put my mind to it and with other support and my family support, I can get through it again and I can have normalcy in my life. I hated grocery shopping; hated it. Came the day that I couldn’t go anymore. I was too sick to go, and now I go grocery shopping with a smile on my face. And I find one thing too: I smile a lot more at people. If I see people—I don’t even know them. I mean, I’ll go to a store and I’ll see the sales clerk and I’ll smile, which I never paid attention to before, but I make a point at smiling at people and they smile back.

And the thank you’s and the please’s, and I just—I don’t know. To me, normalcy is great and I’m so glad I’m on ibrutinib (Imbruvica). It’s done a lot for me and I hardly ever think about CLL impacting my life anymore because I just take my medicine in the morning like I’m supposed to and it’s just part of my life. And I go every three months for my checkups and I know they’re going to be okay, and I just—I don’t know. I just have a positive attitude. I really do.

Jeff Folloder:             

A smile…

Pat Weatherspoon:     

It took me a while though. It took me a while to get there, believe me. It took me a while to get there.

Jeff Folloder:             

A smile may not have the power to cure cancer… 

Elizabeth Dechen:     

…but it makes you feel good.

Jeff Folloder:             

Yes, it does. It does make you feel good. Pat, when I’m out the door at 5:41 a.m. in the morning to get some miles in with my little speed walking, I’ve learned that I have to check myself when I say, “Good morning,” to some neighbors who are walking out with a cup of coffee to their car to head off to their morning commute because they’re just not ready for that kind of positive attitude in the morning. Pat, give us a closing thought. How can we as CLL patients be more centered, be more spiritual, be more—better equipped to deal with a journey that not everyone has to deal with.

Pat Weatherspoon:     

I think I’ve heard all three of you say it already. It’s finding meaning in even the most—in the smallest things. Smiling, looking at—going grocery shopping when you didn’t like it before or taking a long walk. Maybe before cancer, you weren’t walking at all and now you’re walking 10 miles in the morning, which is something I still don’t do.

Jeff Folloder:             

We’re going to get you there.

Pat Weatherspoon:     

One day, but just finding meaning in something that gets you on that journey to travel along that course of your cancer journey, whether it’s getting your family onboard as well. As you said, Jeff, earlier, learning how to say no is a good thing. It gives you that peace, it gives you serenity, and it also gives you control of what you want to do and then have your family members and friends get onboard with that as well. Finding meaning in things that you may have taken for granted before and just finding that meaning. And as I’ve stated when we first started, we’re all spiritual beings, so we can draw from people, their energy, whatever that may be.

Jeff Folloder:             

So, Jay, you and I have gone down a similar path. We’re two guys who are supposed to be the rock and we’re being strong and all that good stuff. For me, hope really wasn’t a part of my life before cancer. Hope is a part of my life now. I’ve been through a treatment that was very successful and, let’s be honest, it crapped out and I relapsed, and I say, “So what?” Every day that I’m in this watch and worry gives the folks at MD Anderson and Mayo and all these places, it gives them time to come up with something even better. And you’re smiling a lot, I’m smiling a lot, Elizabeth is smiling a lot, Pat smiles an awful lot. The hope of tomorrow’s not going to be so bad, is that where you are right now?

Jay Connolly:             

Oh, absolutely. I may be relapsing. I mean, my counts have been going up for a number of years, but very, very slowly. And but last blood test was quite a big jump and so it could be next year or in the next year or two that I’ll need more treatment, and that is not a particular source of anxiety for me. I’ve heard things about some of the medications having some reactions, but then I always remind myself that when people have a negative experience, they tend to advertise when they have a positive experience less so. So, I just think, “Well, there’s a reasonable chance that if I went on the next logical medication that I’ll do very well, and I could do very well for a number of years.”

And I always tell people when they ask—that’s what I tell them and then I say, “There’s a pretty good chance that by the time the next medication runs its course, they will have cracked the code.” And there may be a combination therapy after that or something or brand new medication or two that will sustain me to the end of my natural life, so I am very hopeful. And it’s been said that good doctors make all the difference in the world because they just give us confidence and they become very much a partner, so my doctor doesn’t have the top bedside manner, but I’ve come to develop a great affection for him and his profound intelligence for one thing.

So, I feel like I’m in good hands and I feel that the—so many people that I’ve met in the CLL community, whether they worked for a pharmaceutical company, whether their doctors, or whether they’re patients, they’re a group of tremendous people and really all focused on a cure and treatment in the meantime. And I’ve learned so much from them and somebody mentioned the ACOR list. Very much I’ve drawn hope from the ACOR list as well and just really, “Hey, there’s somebody just like me. Same markers and look at their attitude. It’s so positive and everything’s going really well.”

So, I consider myself fortunate to have found the group and to have found Patient Power, to be able to participate in this kind of thing, and maybe spread a bit of optimism and hope to other patients in the same situation.

Jeff Folloder:             

So, to all the Patient Power folks that are watching this at some point, I guess the message for you is that hope is real, don’t do it by yourself, set your boundaries, understand what it is that you want to get out of it. One of the things that I like to tell people is, “Everything starts with just one step.” Ten years ago I didn’t exercise at all. When I started exercising, I started walking. One step after the other. Just one step. If I’m too tired, I don’t do that one extra step, but the next morning, one more step, one more step, one more step. After a while, those extra steps turn into something pretty impressive.

If you had told me 10, 15 years ago that I would have gotten up, put on my sneakers, walked out the door, and speed walked 26.2 miles in one go, I would have told you to put down whatever it was that you were smoking. But I did it and I enjoyed it and I felt good. And when my doctors at MD Anderson look at me and say, “I’m not quite sure how it’s working, but whatever it is that you’re doing, keep doing that.”

So, I’m going to keep doing that. I’m going to keep hoping that I can continue doing that, and I’m going to keep hoping that the doctors, the researchers, the nurse practitioners, everybody up and down the CLL chain is working their butts off to make sure that each one of us gets to live the greatest life that we possibly can.

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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