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What “I’m Fine” Really Means in CLL

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Published on December 5, 2019

Key Takeaways

  • Patients (often men) downplay how they are really feeling.
  • Caregivers play an important role reporting to the medical care team.
  • Find ways to forget about the disease and allow yourself to live in the moment.

At a recent Town Meeting in Cincinnati, Ohio, chronic lymphocytic leukemia (CLL) patient Dave Kasanicky and his wife and caregiver Lynnda talk about living with and communicating about cancer. Lynnda shares how patients can downplay negative feelings or symptoms when talking to their doctor, and ways care partners can help recognize and inform the medical team of what’s really going on. Dave also shares ways he stays present and has tough conversations with family about his condition.  

This program is sponsored by AbbVie, Inc, Genentech, Inc and Adaptive Biotechnologies. These organizations have no editorial control. It is produced by Patient Power in partnership with The Leukemia & Lymphoma Society (LLS), CLL Society and OHC (Oncology Hematology Care). Patient Power is solely responsible for program content.

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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 | What “I’m Fine” Really Means in 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.

Jeff Folloder:              

Lynnda, you’re the caregiver, right?

Lynnda Kasanicky:     

Yes, I am. 

Jeff Folloder:              

Your husband being a typical male, he was completely and totally truthful and forthcoming with his doctor visits, correct?

Lynnda Kasanicky:     

In his mind yes.

Jeff Folloder:              

Tell me about that.

Lynnda Kasanicky:     

Dave is always—he never wants to worry anybody or doesn’t want to complain about it, so as far as Dr. Essell would say; as far as your pain that you might be on or whatever it’s like, eh, it’s not too bad. Earlier in the day he’s like; oh my gosh, I’m in such pain from my spleen, or whatever the case may be, so he downplayed it just a bit. 

Jeff Folloder:              

Just a bit; so without trying to incite a riot here, doctors and nurse practitioners and nurse navigators, the first question that you ask of patients when you’re seeing them in clinic is something along the lines of, “How are we doing today?” We’ve got nods going on. What is the typical male response to that question?

Audience Member:     

I’m fine.

Jeff Folloder:              

Thank you. Lynnda, they’re not fine, right? 

Lynnda Kasanicky:     

No, they’re not.

Jeff Folloder:              

Okay. Let’s go into a little bit of detail about what “not fine” is. What are things that you as the caregiver need to make sure that the medical team knows is going on? 

Lynnda Kasanicky:     

Well, you know the fact that he was fatigued all the time; he would get home from work, have dinner, and he would be out cold for the night. It kept getting worse and worse as he was in the wait-and-worry stage and his spleen started bothering him a lot, I mean to the point where he was in a lot of pain. That’s definitely something that Dr. Essell needed to know. The good thing about Dave, though is he did a lot of research on that, so he would go into his appointments armed with questions. He’d have questions written down and that, so that was a good thing. He would always downplay the negative things that he was going through.

Jeff Folloder:              

Of course. We’re going to let you talk a little bit now. Tell me about what you love doing right now. What are your favorite things to do?

Dave Kasanicky:         

Right now I guess my favorite things really as John said is John said is just living. In an interesting way this disease has made me realize that old cliché of live in the moment. It’s never been more accurate in how I’ve dealt with the disease and how I deal with my daily life. I very much enjoy playing golf, and I’ve found golf was the one time – even when I was going through treatment – that enabled me to just forget everything and just be in the moment. The one thing I’d suggest to anybody going through this is find that thing that makes you forget everything and be in the moment because it takes the stress, the anxiety, and everything away. 

Jeff Folloder:              

Expand on that a little bit. Tell me about how you achieve a quality of life that is acceptable to you because it sounds to me like you have a more-than-average expectation of what living well is all about. 

Dave Kasanicky:        

I made the comment listening to everybody here. It was in many ways a trip down memory lane because it’s been 12 years for me. Some of the comments that were made in some of the discussions just brought back memories, a lot of them good and a lot of them bad. My expectation is just that. John said about his daughter and his granddaughter; look around, find something that is important to you – whatever it may be – and that is what you want to live for. That’s what you want to look towards. You can’t change the disease. You can’t change the progression of it, but what you can change is how you deal with your day-to-day life. 

Jeff Folloder:              

Do you have children?

Dave Kasanicky:         

One daughter. 

Jeff Folloder:              

I’d like to ask a question of you that can be somewhat of a delicate subject for many of us. How did you tell your child about your cancer?

Dave Kasanicky:         

Initially we didn’t. At that time she was in fourth or fifth grade and we were obviously in the watch-and-worry stage. Lynnda and I made a decision that; why worry a small child about something that may not happen for a few years? In my case I think it was three or four years before treatment, but when we did tell her we sat her down and at that time she was 15. I explained to her what I had and I really told her what CLL is, and I said I apologize but we didn’t tell you initially because – and I explained to her why – and I told her some of the impact. Like Lynnda said, I was always sleeping, to which her comment was, “I just thought you were lazy and mom was doing all the work.” 

That was a tough thing to tell your child, but we’re fortunate enough to have a child I think who really—I know she was worried but she didn’t say it. In some sense she’s much like me, but she really then became a supportive caregiver too.

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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