A CLL Patient's Proactive Advice for Coping With Watch and Wait

Published on

Topics include: Patient Stories

After diagnosis and before treatment begins, many chronic lymphocytic leukemia (CLL) patients enter a watch-and-wait period, where they are monitored by their physician. What can CLL patients do to feel active in their care during watch and wait? Patient Cathy Hamilton shares her advice for feeling more in control and empowered during this stage of a patient’s life with CLL.

View more programs featuring

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.

How did you cope emotionally with your CLL diagnosis?

How I coped with my diagnosis was—in the beginning, quite frankly, difficult. I had just come back from my husband’s brother’s funeral. He lost his last brother to cancer, and we were kind of in a sad place to begin with. But my internist was really good. She sort of warned me, cushioned the blow, if you will, as much as she could.

But I had a fair amount of anxiety, and I think that’s typical from what I’ve read on Patient Power that those first couple of months can be terrifying until you understand that there are several kinds of leukemia, and CLL is not the acute kind that you often see in movies where the heroine dies from leukemia. Love Story was the first thing that I went to. So once I educated myself about the type of leukemia that I had, I felt better. But that was a learning curve for sure.

During watch and wait, what have you done to feel more active in your care?

Well, that was really important to me. I’m a big researcher, so the very first thing I did was get online. And I actually found Patient Power I think before I found any other information. So that was a big comfort just to hear experts talk about the disease and all the optimism involved in the treatment possibilities and that there were new treatments coming up all the time. 

But what I did personally was really commit to some significant lifestyle changes. And these were generally things that I had been doing sort off and on in my adult life. I’d get on a health kick you know and then cool down a couple months later. So I was very much hot and cold on that, but I decided that I really had to commit now. 

So I changed my diet. I’m from the Midwest, and we were big barbecue eaters. Grilling out and charring a piece of meat on the grill, which I realized after studying that was not a good thing to do for cancer. So I went plant-based, within reason. I’m not doing anything drastically. I started exercising regularly. I just upped my game in that way, making it to the gym more often. 

Going back to meditation really helped with the anxiety. I’d been hot and cold trying different types of apps over the years for meditation and really committed to one. I find that’s a wonderful way to start your day just to kind of center yourself. I was doing yoga, and I do yoga probably twice a week. And that, again, is sort of meditation, but it’s also strength training and flexibility work. And I find that really helps me. I feel great after doing that.

And I learned a lot about the lymphatic system and things I did not know, such as unlike the circulatory system that has the heart to pump the blood through our bodies, the lymphatic system has no pump. So we have to move, and we can’t let our lymph stagnate. It’s just the opposite of what you should do when you have CLL. You need to keep moving. 

So I read up and found that walking is great for that, and I’ve been bouncing on this little mini trampoline that I already had in the garage. So I’ve moved that into my kitchen under a skylight where there’s some ceiling height. And I bounce. I get on that thing just a couple of times a day really for three to five minutes, and I find that it sort warms me up and gives me a little cardio boost. And I know that it’s moving my lymph system for me, which makes me feel good. And then I have a stability ball that I had in the attic, and I brought that downstairs. And so I’ll sit on that and bounce during commercial breaks of a TV show at night, and I just feel better after just three minutes of doing that periodically.

And so all of those things combined have really helped me feel that I’ve taken at least some sense of control in this otherwise sort of powerless feeling of watch and wait. Because I am not a patient person. I’ve never watched and waited before, and I like to do thing. So until I need treatment if that day comes I think this is really empowering.

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.

Related Programs

What Happens During Watch and Wait?

In some cases, CLL patients don’t require immediate treatment, and “watch and wait” is recommended by their medical team. What is being monitored during this time? How can patients stay on top of their care? Find out now from our expert panel.

Published:

David’s Story: Taking Back Control During Watch and Wait

For some patients, watch and wait turns into “watch and worry”. Watch as patient advocate David shares ways CLL patients can take back control.

Published:

Dietary Recommendations During Watch and Wait

What should patients eat during watch and wait? CLL expert Dr. Nicole Lamanna has answers for dietary recommendations.

Published:

Advertisement
Join Our Community Register for Events Read Our Latest Blog
Advertisement

Page last updated on April 16, 2019