Lymphedema Marlene Stories-Clinic
Marlene's Clinic Visit

Marlene and her daughter Cecelia (lives with Marlene on the reservation) are meeting Sharon, the daughter who is a nurse at the tribal clinic. Marlene's symptoms of lymphedema started about an hour ago. They are meeting with Patty, the NURSE PRACTITIONER (NP) at the clinic who has worked with a lot of breast cancer patients.

Patty: Hello Grandmother, I am happy to see you; but very sorry that the visit is because you are in some pain.

Marlene: Oh, hello niece, some sit down and talk with me. How is your family?

Patty: Everyone is fine. We are planning to go the wellness gathering tonight. We thought we'd see you there.

Marlene: Oh that would be good to see your family. So maybe you can help fix my arm and we can go back?

Patty: I'll do my best. May I move your poncho back so that I can see the arm that hurts? Marlene nods her head and helps remove the poncho with her arm that doesn't hurt.

Patty (looking carefully at the arm) Grandmother, are you able to straighten the arm toward my opened hand and rest your arm on my hand? Marlene does so.

Patty: That is good. May I gently touch you? Marlene sheepishly nods her head.

Patty gently presses her index finger on Marlene's forearm and the arm shows a dent where Patty pressed.

Patty: Do you remember anything that may have hurt it?

Marlene: Not really. We were just having a real good time. They're real good at the conference to make us get up and move around a lot. That's good for my diabetes. And some of the things they had us do were really silly and fun. Oh, your daughter would have really liked it. I can see her giggling (smiling and chuckling).

Patty: Oh, it sounds very fun and we're all looking forward to going to the gathering tonight. Maybe they'll do some of those same silly things. Would you describe some of the things that they had you do? Maybe one of them wasn't too good for your arm.

Marlene: Marlene looks at Cecelia and Cecelia begins to describe some of the activities, then she says, we also did a fly fishing exercise. You know, where you pretend you're fly fishing and throwing out the fishing line.

Patty: Okay. I don't want Grandmother to show me, but can you show me how this exercise was done please?

Cecelia stands up, places her hands like they are holding onto a fishing rod, pulls her arms up and back, then gently throws the "fishing line" into a make-believe stream.

Patty: Okay. That was very helpful Cecelia.

Patty turns to look at Sharon, Marlene's other daughter who is also a nurse at the clinic.

Patty: I'm glad all three of you are here so that you can learn how to help prevent this from happening again. Or, if it happens suddenly, you know what to do. They all look attentively at Patty.

Patty: This swelling and pain that you are having in your arm is called, "lymphedema". It is a problem that can happen to you anytime after your surgery. It is because the doctors had to look at your lymph nodes to see if there was any cancer in them.

Marlene looks blankly at her daughters. Cecelia begins to translate and Sharon also translates to help explain what lymph nodes are.

Marlene: So is this because of that scar I have under my arm?

Patty: Well, not from the scar, but from the surgery that was done under your arm. Because the doctors had to look at the nodes, you will always have to be extra careful with this arm.

Marlene: What does that mean? She looks at her daughters again. They turn and look again a Patty. They too do not understand what this means.

Patty: You have to be careful to never carry groceries, your knitting bag or anything else that is more than 3 pounds with this arm. When you come into the clinic, either here or at the Cancer Center, remind them that you've had problems with the arm swelling. The providers cannot ever give you a shot in this arm. Do you understand? Marlene looks a bit confused, but nods her head.

Patty: You know what blood pressure is? You know when we but the cuff around your upper arm and pump air into the cuff to make it tight. Then we let some air out of the cuff. When we do that, we are reading a screen that tells us your blood pressure.

Marlene: Yes, I have that all the time. Because of my diabetes and because I am an elder.

Patty: Yes, that is right. Well, from now on, you need to tell the providers that they need to use your other arm for blood pressure tests. When they ask you why, explain that your arm gets swollen since your breast surgery. Marlene, Sharon and Cecelia all nod their heads that they understand.

Patty: I am going to give you a sheet of paper. It is in English but Sharon or Cecelia can explain anything that doesn't make sense to you. You can also always call me up and I'll help explain too. This paper is a list of things you need to do, starting today, to help protect your arm. I am going to use an ace bandage to gently wrap your arm, but you need to get an elastic sleeve. I will help Sharon order one for you today. Until you receive it, you need to wear this ace bandage. I will show Sharon how loose to put it on. We don't want it to be too tight. Most important, you need to keep you arm and elbow resting on something soft that makes your arm higher than your heart. Cecelia and Sharon told me you used the ice chest and blankets in the truck on your way down here. That was very good. But you need to also do this when you are sitting in your rocking chair at home and when you are lying down. Tell me some ways you can do this?

Marlene looks blankly at Patty, then to Sharon and Cecelia.

Sharon: Mom, Patty is saying that we need to find a way to keep your arm raised up when you're sitting in the rocking chair at home and when you go lie down for a nap or to sleep at night. Do you still have that soft old feather pillow that June used to always love when she was a little girl? Marlene nods. Okay, we can use that to rest your arm on.

Patty: Grandmother, in addition to the things on this list, there is another one that is very important for you. I know you always enjoy berry picking in the summer. You can still pick berries, but you need to wear the sleeve and a tougher jacket, like a light windbreaker, to protect you from the thorns. We do not want you to get any cuts, punctures, or insect bites on this arm ever again.

Marlene: Oh, that's going to be hot!

Patty: Yes, put you can wet the windbreaker before you put it on so that it helps you stay cool. You need to do this even when your arm is not swollen.

Marlene, Cecelia and Sharon all nod in agreement.

Patty: Now, the other thing we are going to have you do before you leave today is to go visit Peg. (Patty turns to look at Sharon) Sharon, please tell Peg that your mom needs a gentle massage to help the lymph fluid drain from her arm. Patty turns and looks at Marlene again. This is not going to hurt. Peg has been trained to do these very special massages that may help your arm get less swollen. Right now is has extra liquid trapped in the tissues. Peg will help gently massage the arm so that some of the fluid drains away into your body where healthy lymph nodes can capture it and get rid of it for you. Marlene nods. Before you go down the hall, we're going to have you drink some water and take a mild pain reliever too, okay?

Marlene nods and says: Do you think I can go back to the gathering or do I have to go home?

Patty: Let's see how you do after Peg does the massage on you and you've had the ace bandage on for a while. Because you were so good and told Cecelia that your arm was hurting, you got here very quickly before the symptoms got any worse. That is something you will need to do if this ever happens again, okay? You tell Cecelia or Sharon right away. No waiting. Okay, Grandmother? We need you feeling well. You are too important to all of us.

Marlene (smiling): You are a good nurse too and we are lucky to have you at our clinic.

Patty: Thank you grandmother. Now, after Peg is done with her massage and she wraps your arm again, I want you to come see me before you leave the clinic, okay? Both Cecelia and Marlene nod their heads in agreement.


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