Lymphedema Marlene Stories
Marlene's Lymphedema Symptoms

Marlene and her daughter Cecelia (lives with Marlene on the reservation) are attending a Native wellness gathering at a hotel about 30 miles from the reservation. They are sitting on the bed in their hotel room.

Cecelia: Mom, what's the matter? You look like you don't feel too good.

Marlene: woo, daughter. You're right. I don't feel so good.

Cecelia: When did this happen? You were laughing and having fun downstairs. Wiggling your butt around with all of the other elders. You really looked like you were having a lot of fun.

Marlene (smiling): yeah, I was. That was fun to be together and laugh and be silly. But I think maybe one of those activities may have hurt me. I didn't notice anything at first. Just after we all sat down. I didn't want to walk out because Harold was speaking and I didn't want to be rude.

Cecelia: Okay, well, what are you feeling now?

Marlene (frowning): ah, I sort of have this hot feeling in my arm. And it hurts. I don't want to move it or it hurts even more.

Cecelia: Okay mom, may I look at your arm?

Marlene: Yes, but don't hurt me none, okay?

Cecelia: I will just look first and tell you if I'm going to try to touch it before I do. I don't want you to be hurting.

Marlene lifts poncho-shawl with her "good" arm to show the arm

Cecelia: Uhmmm, Momma, I think it is getting swollen. We'd better call Sharon (sister who is a nurse).

Marlene: Oh, I don't want to bother her. She's probably at work. Maybe I'll just lie down for a little bit and see if it goes away.

Cecelia: I think Sharon will be angry if we didn't call her. Please let me call her, okay Mom?

Marlene: Well, okay, but if she's busy, maybe she can call us back later.

Cecelia calls Sharon who is at home on her way to the clinic for work.

Sharon: I'm glad you let me know. I've been talking with the other nurses who work a lot with cancer patients and they've been helping me learn more about some problems mom may get. I think these symptoms are for a disease called, lymphedema. It is because she had to have so many lymph nodes removed when they took her breast.

Cecelia (covering the mouth piece of the phone so that her mother won't hear her): What do you mean a new disease?

Sharon: Well, it is something that can be controlled. It isn't going to make her die. But you need to get her some help right now. The sooner the symptoms are under control, the more likely she is to do well.

Cecelia: Okay, should we just go to the tribal clinic? We don't have to go all the way to the Cancer Center, do we? We're not that far from the tribal clinic. We're at the Microtel Hotel for the wellness gathering.

Sharon: I'll be at the clinic in about 20 minutes. Why don't you and mom come on in? I'll tell the receptionist that you're coming. I would like Patty, the Nurse Practitioner (NP) at the clinic to meet with all three of us. She knows a lot about cancer and this lymphedema.

Cecelia: Okay. Mom says she wants to lie down to see if the pain and swelling just go away.

Sharon: No. I want you to come in so that we all learn more about how to handle this. Does the hotel have a small, soft pillow?

Cecelia: Well, they're kind of large and foam. Why, what do I need the pillow for?

Sharon: When you get mom into the truck, I think we need her to keep her arm up a bit higher than her heart. Her arm needs to rest on something soft like a pillow. If you have her lap blanket with you, that may work as well as the foam pillow. Can you pile the blanket on top of the small ice chest so that when she rests her arm on it, her arm is a little higher than her heart?

Cecelia: Yeah, we can do that. She always has her lap blanket and you know I always have the ice chest in the truck.

Sharon: Good, so before you pile the blanket on top of the ice chest, give her a bottle of water to drink too, okay? She is going to need to drink water rather than her favorite soda, okay?

Cecelia: Okay, I'll get started now and we'll see you at the tribal clinic.

Sharon: Thanks for letting me know. I'll call Patty before I leave home so that she knows to expect us.

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