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My Partner in CLL

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Published on January 29, 2020

Key Takeaways

  • After hearing the word cancer, most patients retain very little after that.
  • Having someone at your appointments to listen and take notes is critical.
  • Care partners can provide emotional support and advocate on your behalf.  

Chronic lymphocytic leukemia patient Al Hollis and his wife and care partner Teresa share their personal story of Al’s cancer diagnosis, steps leading up to treatment, and the importance of having a partner to lean on, talk to and be an advocate on his behalf. Watch as Al and Teresa describe how a care partner can provide support and help loved ones navigate their journey with CLL.   

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 | My Partner 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.

Carol Preston:            

Can you tell us a little bit about your story, please? And we’ll bring Teresa in on how she is a very critical part of determining what your care is.

Al Hollis:                   

I had a regular annual checkup with my primary care, and I felt great, I mean I felt awesome! And we did a blood test in January of 2018, and blood tests came back pretty abnormal, and I still felt great. He said I’m gonna refer you to a hematologist, okay, no big deal. So, we get on the phone with his recommended hematologist and I get off the phone, and I look at her—and let me say this right now, I’ve been so fortunate 42 years ago, she said yes! And she’s sitting with me here today because, for those of you who are dealing with this personally, you’ve got to have a partner that helps walk through this with you. It is absolutely critical, absolutely essential.

Someone to lean on, someone to be there, someone to listen to you moan and groan because that’s going to happen, but someone to be there and advocate for you, sometimes when you can’t talk, or when you don’t know what to say, or what the next word is, or what the next question is. So, anyway, I get this—I make contact with this hematologist, and I get off the phone, I said honey this guy is a hematologist/oncologist, and she looked at me and said what? We had the first meeting with this hematologist, and he ran his series of tests, and our first discussion with him was you have cancer, you have CLL, I said okay what are we going to do next? He said wait, and she goes what?

You don’t wait with cancer! We both got cancer in our family background, so you know you don’t wait. And that really wasn’t explained very well, so, okay, he knows what he’s doing he’s a professional, I’m cool with that. She wasn’t, she looked at me at the time and said, you need a second opinion.

Carol Preston:            

As the care partner, just talk about in your own words you’re on the receiving end of Al’s phone call with the hematologist or visit, and you were apoplectic, it sounds, about what you were hearing. And so, why was that? 

Teresa Hollis:            

Well, he’s always been extremely healthy, so this was kind of counterintuitive that we would have that degree of a problem, to begin with. And the terminology, he said his internist who referred him to the hematologist, I feel didn’t prepare him for his concerns, how it was going to unfold. So, he said call this doctor there’s something weird with your blood. That was really what he came home and told me. So, I’m sitting there mainly because I want to see what the schedule’s going to be for how we were—and when they answered the phone, he hung up. And I said you didn’t even say hello, he goes that’s an oncology department; he was—it was a shame to give him that blow to not prepare him a little bit.

So, I kind of had my heckles up over that, so he called back and asked for the appointment, and I was struck by something that Dr. Awan said earlier in his talk, that the doctors that get so used to what they’re doing, and that was from the moment this doctor walked into the office it was like we were on the clock, and we were about to run out, and he wasn’t very informative. He certainly was dismissive, you feel good, fine, come back and see me when you don’t feel good. This is pretty much what I remember him saying, the treatment that we’re going to offer you; you have to feel worse than the treatment is going to make you feel before we begin the treatment.

So, we’re waiting for him to fall apart so that he can start to feel better. So, we did keep going—once I saw what that was like, I did go with him to his future appointments, and every time we’d walk out of there, I kept saying we need to talk to someone else, this is – we’re not getting the whole story here. And only when they finally said okay now you feel bad enough that we need to start chemo, then he’s like chemo? And he’s a very active person so we’re talking about cord placement and the chemo treatments and he did not want to do that. We did not want to do that. So, he became engaged in what else is there? Finally, he got involved very aggressive about online searching and discovered the information that was available, and I’m taking over your story.

Carol Preston:            

No, not at all. But in addition to being patients and patient advocates, I want to mention, as you heard Al and Teresa say, they have been married for 42 years, no small feat. 

Having someone there at your appointments is critically important, it’s as important as seeing a specialist. Why? As a mostly retired communications consultant, I can tell you that memory retention is only 10 percent, and when you hear the word cancer or leukemia, your ears become filled with wax, you hear nothing.

So, it is very, very important, at least in the early stages, to bring someone with you. It could be a spouse, significant other, a friend, even an adult child who can sit there and take notes, because as many of you know from experience you will hear very little. Especially at the get-go. So, for Al, Teresa, in many ways, saved his life.

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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