Marsena Pelton, MSN, RN, OCN: Jim, tell us how you felt when you first received a chronic lymphocytic leukemia (CLL) diagnosis?
Jim: Well, when I first (was) diagnosed, I was in a bit of shock, to be honest with you, because I didn’t realize it and I (found) out from the doctor that I’d had it (for) six or seven years. I just thought I was getting old because I just wanted to sleep more and I had little energy.
Before I knew I had it I realized that I was getting more tired, I just didn’t want to do the things I used to do. In fact, I’m an avid stamp collector and I wasn’t even doing that. My wife is trying to coax me into getting things done. We used to go on long hikes because we love to hike, and I didn’t want to do that. I just didn’t have any energy and I thought it was because I’m 60-something years old now, or 70. When it first started, I was in my late sixties. Found out I had it, I was in seventies, and I thought well, this must be that old age you got and I just had no energy.
We go every year just to have physicals and we went to see our doctor and she said your spleen, I think it was the spleen, feels — I’m going to recommend you to an oncologist. I go “who?” That’s fine. We go over to the cancer center where Dr Sharman’s at.
We see Dr Sharman and he says leukemia is one that you watch and when it gets bad then we have to start treatment and we’ll decide at that time. Then they took a blood test and we had to go back the next day and he goes, “You’ve got it really bad. I suspect you to start being symptomatic in two months.” Then, he says, “I’ve got a program that I want to get you into that is a study and I’ll see what I can do about it.” He left the room right away and came back and said, “I got you in the study.” I’m all for that because I think anything you can do to help yourself and others. I said, “Yeah, I’m all for it.”
Marsena Pelton, MSN, RN, OCN: Nichole, after a patient is diagnosed with CLL in what ways do you support them navigating their care?
Nichole Fisher, BSN, RN: We are a part of every patient’s journey, since every journey is different for our patients. It is our job to help guide or navigate them through what can be a very overwhelming and scary situation. Patient navigation involves providing support to overcome barriers to cancer care. I help provide support by being their main point of contact for questions and concerns, patient education, emotional support and side effect management. I also help coordinate care with additional resources as needed, such as financial counseling, social work, pharmacy, dietitians and hospice services.
Some of the signs and symptoms that we discuss with our patients is typically there’s a significant amount of fatigue, but some of our patients report there are also some thrombocytopenia issues, which is a low platelet count. Some of our patients are at risk for increasing bleeding and/or bruising. It primarily again affects other blood counts as well. Patients often present with anemia as well, which is a decreased hemoglobin level. They can have increase in again fatigue and some shortness of breath, too.
Marsena Pelton, MSN, RN, OCN: Jim and Becky, knowing there are a lot of tools and resources out there for patients that are navigating the CLL journey after being newly diagnosed, what have you found to be the most helpful?
Jim: The team at the Willamette Valley Cancer Institute in Eugene, Oregon, is so positive and so helpful that any time we had a question or whatever, they said “call,” and we did, believe me. We got all the answers and whatever it (was) we were curious about they tried to help. We even went in one extra time to talk to the nurse to straighten a couple of questions we might have had, just to make sure, and they were just like I said, like family. I can’t get over what a great team they are and that’s why I drive from Salt Lake City. Now I go once every, what is it? Six weeks? Three months? I go every three months for a checkup to see the doctor.
Becky: For resources when he first started with Willamette Valley Cancer Institute, they came out with a packet that said (the word) cancer on it. It’s in a plastic folder, but it had a calendar in there so we kept the calendar and we’re able to even now refer back to that calendar — how much he had done and when he had it done. I kept all his paperwork so that we knew exactly what they were doing and when they were doing it. We had no questions that couldn’t be answered.
He got the flu at one point in time and they were excellent about that. He got over the flu really quickly.
Marsena Pelton, MSN, RN, OCN: Becky, the role of a caregiver can mean you’re often supporting your loved one in understanding their disease and treatment journey. Tell us a bit more about your role and the impact of your husband’s cancer diagnosis?
Becky: We’re really proactive about our health, so the minute we got home I went on the internet and I Googled Dr Sharman to see what CLL was and how it was going to affect us and the things that I could help Jim do that would make his life easier. I started making kale shakes for him because he likes to eat a lot of sugar and I cut that out, and I made sure that he (received) really good nutrition so he’d be built up while he was taking his infusion so that he wouldn’t feel like his immune system was down, so he’d feel healthier all the way around.
It was hard at first. The more you learn about it the more secure you feel. The team was absolutely amazing and explained everything to me that they were doing, so at that point, it made it really easy on me. I went to every appointment with him and they were seeing success right away, so I’m like “OK, this is working.” We’re doing well and we went along that route and we’re both very pleased with it. He started getting more energetic so we could do the things we used to do. We like to play a lot of cards together and we take hikes and we like to try to get in 10,000 steps a day. We don’t always do that. We make an effort to stay healthy and positive.
The one thing I wanted to do, I realized right off the bat, this is Jim’s problem, Jim’s cancer and if I get negative then that’s not going to help him to be positive, so I thought having a positive view on life was very, very important at that point.