Storytellers

Introduction to the Storytellers

For thousands of years, before there were books, radios or televisions, Native Americans used stories and legends to remember the past and to pass along important wisdom to young and old alike. Keeping with this tradition, this site provides Storytellers as a way to give you information about how real cancer survivors have dealt with the many issues surrounding cancer. However, some survivors do not want to be identified as a survivor (e.g., ostracized by the tribal community). The caricatures that are featured on this site have fictitious names and their stories combine bits and pieces from three real Native survivor's stories. This has been done to protect the privacy of the people who have so generously shared their cancer experiences with us.

Leslie is a 63 year old woman who is living in the city with her husband (42 years of marriage). She has five children and 2 of her children live in same city as she and her husband. She has a strong, supportive family. She is a college graduate and currently is retired from her career as an accountant. She has private health insurance with a high deductible ($500). She uses public transportation and does not drive. She has both local and long distance phone service. She was diagnosed with stage 4 breast cancer. She lives within 25 miles of cancer center.

Names and ages of family members:
husband = Ralph
24 year old = Doris
37 year old = Michael
38 year old = Thomas
41 year old = William
42 year old = Dorthea

Read Leslie's Story about Deciding on Treatment(s)

Leslie and her husband are sitting at home after talking to the doctor about her diagnosis.

Ralph (husband): Well, how are you feeling about all of this?

Leslie: Im still a bit in shock, but figure that well do okay. I know a lot of other women who have had breast cancer. The treatment is going to be hard, but they’ve done okay.

Ralph: what do you think about what she said about no surgery?

Leslie: Well, I think the cancer is already pretty advanced. I should have gone in earlier, but I was so busy at work before I retired that I just kept putting off the appointment for my mammogram.

Ralph: Our insurance plan will cover the chemo without having to pay the deductible. I asked at the desk when you were in the bathroom. So we dont need to worry about paying for the chemo treatments.

Leslie: Yeah, thats a relief. It sounds like it is going to be a pretty rugged chemo. So, I guess youre going to have to cook for both of us. I asked the doctor for the anti-nausea medications and she says to start taking them the day before my chemo begins. But she also says that even with the drugs that Im likely to have some queasiness and lose my appetite. She suggested that we pick up some high nutrition drinks, like Ensure®, but it doesnt have to be a brand name like Ensure®. There are others that are just as good and less expensive. So, how about when you go to the market today, pick up some of that. She also suggested that we get some Pedialyte® or Gatorade® or something similar to replace electrolytes in case I start vomiting or have diarrhea. She said to just be prepared. Not buy a whole lot because I may not have a big problem and that my tastes would change. So something that tastes good now may not taste good to me in a few weeks.

Ralph: Ill take a run by Costco® and see if I can get a variety pack of some of these things so that you can change flavors when you need to.

Leslie: Yeah, the nurse at the hospital also told me about an express busline that has a pick-up close to our apartment.

Ralph: Well, its only 25 miles away and I cant think of any reason why I cant take you. If I have a problem, one of the children should be able to do that. You may not want to be a bus in case you suddenly feel sick like the doctor was telling us may happen. She made it sound like you could be in the middle of a trip home and feel okay, then feel badly.

Leslie: Okay, that sounds good. We can bring a bucket in case I need it. She also told me to bring a lap blanket. So, were going to get through this. END

Read Leslie's Story about Treatment: Chemotherapy

Leslies cancer was too advanced to do surgery. She is having heavy dosages of chemo. She is home volunteering her time by doing the budget for the WIC (Women Infant and Children) program. There is a knock on the door and then it opens and her oldest daughter, Cecelia, walks in.

Cecelia: Hi mom, I was on my way to the store and stopped by to see if you needed anything. How are you feeling?

Leslie: Not so good. I'm just sitting here watching TV. Don't even feel like beading.

Cecelia: Oh, you've got to be feeling bad if you don't even want to bead.

Leslie: Well, every time I look down to pick up the bead, I feel like I'm going to throw up. That's why I've got the trash can sitting here. Just in case.

Cecelia: Oh, Mom. I thought that medicine the doctor gave you was supposed to stop you from feeling sick to your stomach.

Leslie: Yeah, me too. But I guess it didn't work. I just feel tired all over. I don't want to do anything. It took me two hours this morning to get out of the bedroom.

Cecelia: What do you mean it took two hours to get out of the bedroom?

Leslie: Well, I tried to get up and your daddy helped me sit up. So I sat there for a while, then I laid back down.

Your daddy was done with his shower and saw me lying down and asked if I wanted to sit up or lay down. I say, sit up. So he helped me sit up again. And I just sat there. He brought me some tea and crackers to eat while I was sitting there.

So, I finally thought, okay, get up, get out of bed, get going. And I start to stand, but then I felt so weak and sick again that I plopped back down on the bed. I scared your dad half to death. He heard me and came running in. So here I am lying with my feet on the ground and my body stretched out sideways on the bed. Your daddy crawls on the bed next to me and says, "I don't know, but maybe you should just stay in bed today." I said, "Nope, I'm not letting this get me down. I've got things I need to do. I have to finish Margaret's dress for the powwow." So he says, "why don't I just work here in the bedroom." I say "No, I've got to get to the living room. I'm not gonna be lying around like some sick woman."

So, we try again. I sit up. It takes five tries before he finally gets me here to the couch. Now that I'm here, I don't even have the strength to hold the needle and do the bead pattern for Margaret's dress. I've got to get it done.

Cecelia: Mom, I can help. I don't bead as well as you do, so how about if I sew the seams and get the rest of the dress ready?

Leslie: Okay, that would be good. I'll keep my bead pattern close by in case I feel like I can do it.

Cecelia: Are you sure you don't want to go back to bed and just take it easy today?

Leslie: Nope. My mind is made up. It took your daddy and I a lot of effort to get me here and here I'm staying.

Cecelia: Okay Mom. What can I do to help?

Leslie: Well, I'd really like to change the channel but the batteries are dead in the remote control. Would you pick me up some more batteries?

Cecelia: Of course Mom. What time is daddy getting home from work?

Leslie: He says he's going to come home at lunch time to make certain I eat something, then go back to work.

Cecelia: I can fix you lunch if you want Mom.

Leslie: No, not really. I don't feel like eating. I just try to make your daddy happy when he makes lunch for me.

Cecelia: Does the doctor know how weak you're feeling and that you don't feel like eating?

Leslie: Oh yeah, I'm sure he does. He said that the drugs would probably make me feel sick to my stomach and other stuff.

Cecelia: Well, yeah, but you're really weak. I mean does he know it took you and daddy five tries before you made it to the couch?

Leslie: Well, no, but I don't want to bother him

Cecelia: Gee Mom, that isn't like you. You always speak your mind.

Leslie: Yeah, but I just don't feel up to it right now.

Cecelia: Well Mom, you're probably right that this is just normal for these types of treatments. But I'd feel a lot better if the doctor knew how tired and sick you're feeling. Would it be all right if I called him for you?

Leslie: Oh, I don't want you to bother him.

Cecelia: Mom, you're my mother and I don't like seeing you like this. I'm going to call him and make certain this is normal. Or see if there is some other medicine that may help you out through this.

Leslie: Okay. END

Read Leslie's Story about Side Effect of Mouth Sores

Leslie's cancer was too advanced to do surgery. She is having heavy dosages of chemo. She is in the living room when her husband, Ralph, comes in the house.

Ralph: Uh ho. You don't look very happy.

Leslie (a little grouchy): You won't be happy if you had sores all over your mouth and throat.

Ralph: Oh honey, I am so sorry. What can I do to help?

Leslie: I don't know. I just hurt. I'm irritated. I'm angry at this cancer. I want it to just go away. I asked Thomas to go online for me and find out what I can do about these sores.

Ralph: So what did he learn?

Leslie: Well, they'll go away … but I may have them for a while. He is stopping by the dentist to get me some numbing solutions. He says I will need to put some of it on with a cotton swab and the other I need to gargle with and then swallow small amounts to try to get the solution to hit the open sores in my throat.

Ralph: Oh, that doesn't sound good.

Leslie: Oh, I won't mind if it helps any.

Thomas comes into the house carry a small bag.

Thomas: Hi mom. Hi dad. I got here as fast as I could. I also picked up some popsicles and hard candies for you, Mom.

Leslie: Huh? Why?Thomas: The dentist said it was okay for you to have the candies and that they have a numbing ingredient that may help your throat. The popsicles will help cool down the sores and may reduce the inflammation too.

Leslie: Well, that's the best news I've heard all day. I'll take a Popsicle please. Would you two like to join me?

They all smile.

END

Read Leslie's Story about Palliative Care: Making Choices about Advanced Directives

Leslie and Ralph's children, Dorthea, Thomas, and William just finished dinner and are visiting at the kitchen table. The grandchildren are picking up and doing the dishes (and eavesdropping on the conversation).

Dorthea: Mom, I still don't understand why you and dad chose to not have any life saving efforts if you have an emergency.

Leslie: Well, it is our decision. We both talked a lot about this and feel that life saving techniques could cost you all a lot of money, result in us not having a high quality of life even though we'd be alive, and that such an event may be the Creator's way to take us with little pain and discomfort of all of us.

Marcia (23-year old daughter of Dorthea) [wiping the dishes and turns to talk to the elders at the table]: But Grandma, what if the emergency could be easily taken care of? You know, like on TV, those big electrical shockers to your heart?

Leslie: (chuckling) yes, I know what you mean, but no, I don't want anything like that done to me. Who knows what all of that electricity could do to your brain (she makes a funny face and everyone chuckles).

Hugo (16 year old son of Thomas): Oh, very funny Grandma! But I learned in school about this guy who goes around killing people who want to die and all of the legal issues. You're not going to do that are you?

Leslie: (laughing harder). No, don't worry, Hugo. Those are mercy killings and other similar types of chosen deaths. I'm not choosing to die. I am simply clarifying how I wish to die if I have a health emergency. I won't have one of those mercy killings done. Neither will your grandpa!

Hugo (still concerned): But I heard that if you sign one of those forms that they don't feed you and you could die of starvation. None of us in the family could even sneak you some food! I couldn't do that, Grandma!

Leslie: (more serious). I am sorry you are so concerned. But the body has a natural way to prepare for death. Most people who die naturally aren't hungry or thirsty. It is the body's natural way of preparing to close down. Feeding me if I was unable to talk with you, would only make the dying process harder on my physically and spiritually. I would not want to see you upset. This is an important decision and one you should also think about what you would want for yourself.

Hugo: But I'm only 16!! Why would I want to think about anything like that?

Leslie: Because these are important choices. You should make these choices for yourself. What if there was a school bus accident? What if you had serious problems that didn't allow you to talk or tell us that you were in pain? With what types of health problems would you be willing to live and what types would you not want to live with? Look at Jamilla who is quadriplegic, but she is a happy child. She does artwork using her mouth to hold the paintbrush. Her advance directives are good for her.

Hugo: Yeah, Jamilla is pretty cool. I like her a lot. She is also really smart. Do you mean she has done these types of documents? She is only 14?

Leslie: Yes, she is only 14, but when she was hurt the social workers and nurses in the hospital talked with her and her family about her life. She made the choices with her family's support. They are so proud of her and love having her alive and happy. But these were hard choices for all of the family. But it was right for them. What do you think would be the right choices for you?

Hugo looks thoughtful as do the other family members.

To the reader: Have you prepared written "Advanced Directives" for yourself? END

Read Leslie's Story about Palliative Care: Making Peace in the Family

Ralph: So, how are you feeling today?

Leslie: I have made some decisions. I think it is time for me to learn my death song and get ready.

Ralph (alarmed): Are you in pain? What can I do?

Leslie: Oh, I am okay. I know that no one wanted me to know that the cancer is bad, but of course I asked the doctor. I still will do all that I can to keep the cancer under control and I'm still thinking about doing a clinical trial. But I also have to be prepared.

Ralph: I need you with me. I would be lost without you.

Leslie: Yes, and I would be lost without you too. I think we both need to be prepared. I would like to call the traditional healer and have him come over to help us both get ready.

Ralph: What about the children and grandchildren?

Leslie: First, I think this is something you and I need to do. Later we will talk with the children.

Ralph: What are your thoughts?

Leslie: I need to make peace with Michael and his family.

Ralph: You can't fix Michael. He is a violent alcoholic. The problem is his and his family. I just don't know why his wife doesn't take the children and leave him. You've already given them the Shelter information and they will protect them so that he won't know how to find them until he gets some help. I am so ashamed of his behavior.

Leslie: You and I have nothing to be ashamed of. You never showed any violence to me or any of the children. He is this way because of his drinking. I need your help.

Ralph: What can I do? I cannot stop him from drinking. Only he can do that. And he doesn't seem to care enough about himself or his family to quit.

Leslie: No, I agree with you. He is the only one who can make this change. But I need your help to find him when he is sober so that I can talk with him. I must make peace or at least try one more time.

Ralph: I guess I can call his wife to see if she can tell me when he gets up in the morning or when is the best time to find him when he is sober.

Leslie: Thank you, dear.

Ralph: May I be there when you talk with him? I don't trust him alone with you. He could hurt you.

Leslie: Oh, I doubt that he'd hurt me. He is the one in pain. I think it's fine if you are with us, as long as you don't lose your temper. I need to talk with him quietly and calmly.

Ralph: Okay. I will keep my mouth closed. I'll sit over on the side so that I don't have to look straight at him. Then I'll avoid glaring at him. Ohhhh. He makes me so disappointed. I am so frustrated with him.

Leslie: Yes, I understand that. But we no longer see him, even when he is around us. We only deal with the drug and what it has done to him. He is sick. We all know he needs help and that is why we fought. But it has been a long time now. If I suddenly get worse, I don't want to be too weak to say the things to him that I think he needs to hear.

Ralph: But you're not going to get worse. You're doing better now that the chemo is done. Don't say things like that.

Leslie: I am just being realistic. We don't know what the cancer will do. I do feel so much stronger now that the chemo is done. I plan to live many more years. I still want to go on the Alaska cruise with you! (smiles) But, you never know. The Creator may decide he wants me with him. So, I need to prepare. Making or trying to make peace with Michael will help me feel more balanced and healthy.

Ralph: Okay. I will do whatever you want me to do. What is it you want to say to him?

Leslie: I want him to know that I love him and I always have and I always will. He will always be in my prayers. I want him to know that I understand his battle with alcohol is his to take on, but that the family will help him when he is ready. I want him to know that I love his wife and our grandchildren.

Ralph: Well, okay. You are stronger and more forgiving than I am. But you're right, as usual. He does need to know these things. And even though I am so angry with him, I do love him and his family. You're right. I'll call Josephina today. END

Read Leslie's Story about Palliative Care: Making a Will

Leslie and Ralph are talking in the living room. They have talked with all of the family about Leslie's diagnosis. She has finished her chemo and is feeling strong. She still has some problems with fatigue.

Leslie: I'm glad we met with the lawyer today to finish our wills.

Ralph: Yes, I guess I am too. It was hard to do.

Leslie: Well, I still think the hardest part was setting things up so that Michael cannot get anything until he becomes sober for at least five years.

Ralph: I think that is fair. Besides, the grandchildren are protected because of the trust fund you put in for them. Actually, I like the part about Josephina receiving money if she goes to a shelter just in case Michael doesn't clean up his act.

Leslie: Well, I sometimes wonder if Josephina would get some help from Michael's abuse if she financially was more stable. So we eliminated one more barrier for her to take care of herself and the children.

Ralph: Yeah. She was really surprised when you told her about this in private. She was crying when she left your room after her visit today.

Leslie: Well, that is because I didn't want Michael to threaten her or blackmail her with the promise of the money she gets if she gets help in leaving him until he is a recovering alcoholic and has his violence under control. I also told her that you and I would provide her and the children money now, when she is ready to do something to protect herself. She doesn't have to wait for either of us to die to get help. It is not right.

Mary is a 45 year old widow who has four children, ages 15, 17, 20, and 22. She has a high school education and lives in the city, but has no personal car. She respects her tribal customs, but is very modern. She works half-time as a secretary, has no insurance and is not eligible for IHS services since she lives in the city that does not have an IHS facility. She has local phone services only. She has stage 1 breast cancer. The closest cancer center is 12 miles away. She is an assertive, but not aggressive, communicator.
Names and ages of her children
15 year old = Margaret
17 year old = Caren
20 year old = Joe
22 year old = Lance

Read Mary's Story About Treatment: Choices

Mary was very upset when she was told about the cancer. The provider held her hand, asked her to relax and told her cancer was very early stage of growth and her chances of surviving and living a normal life were very good. She said she wanted to go home and pray and tell her children what was going on. She told her children a few days ago about her breast cancer diagnosis. She had another appointment today with the provider to talk about treatments. Mary is sitting in the living room with all four of her children.

Mary: The doctor says my cancer was found early enough so that both treatments are likely to be good to cure the cancer.Margaret (the 15-year old): Mom, which one is the best treatment for curing the cancer?Mary: I was very surprised when the doctor told me today that I had a choice of chemo alone or surgery and radiation. If I have the surgery it means having the lump removed and then having radiation for six weeks. If I have the chemo, it means going to the clinic for several weeks to have the treatment.

Joe (the 20-year old): But mom, if you have to do treatments for a lot of weeks, how will you get back and forth to the clinic. Are you going to feel well enough to take the bus?

Mary: I don't know how I'll feel. But the clinic is only 12 miles away and I only have one bus transfer to take.

Caren (the 17-year old): I can drive you to the clinic, Mom. Then you won't have to take the bus if you don't feel so good.

Mary: Yes, that would be nice. But I need to make certain I can schedule the appointments so that you don't miss your college classes.

Joe: Whether you do the chemo or the surgery with radiation, one of us should be with you and take you to the clinic.

Lance (the 22-year old): I agree. At least one of us should be with you the whole time. I can talk to my boss about taking some time off to help. He'll understand.

Margaret: They both sound pretty scary to me. Mom, are you scared?

Mary: I'm a little scared, but I feel better since I talked with the doctor today and I went to Larry, the traditional Indian healer and prayed with him for a while. We also talked about it. He will come over later tonight to pray with all of us. But I told him I wanted to talk with you first about my choices.

Caren: So which do you want to do, mom?

Mary: I have been thinking about it all day long. I have been praying and asking the Creator for guidance. I think I don't want to do the surgery. It just doesn't feel right somehow.

Margaret (crying): But mom, won't you get sick from the chemo?

Mary: Well, a lot of people do get sick. I won't know how I'll react until I start taking it. I just dont want anyone to cut my body unless it is in ceremony. I just feel it isn't right for me to do.

Joe: Okay mom. What can we do to help? I don't know anything about chemo. Is there something I can read?

Mary: Yes, the provider gave me these booklets today that explain some of the side effects and what may happen. I think we should all read them. I think we just need to wait and see how I do with the chemo.

Margaret: I can help with the cooking and cleaning.

Caren: Me too, mom. I also can help drive you to the clinic and stay with you.

Lance: I think we need to find out how often you've got to go for treatments and Caren and Joe and I will work out a schedule to take you. We can all take turns staying with you while you're having the treatments. Is that okay? For us to stay with you while you're getting chemo?

Mary: Yes, the nurse showed me the room today where chemo is given and it looks pretty comfortable. There were other family members with the patients today. So I think this will be okay to do. We'll work it out together. Now, lets pray.

Read Mary's Story about Side Effect: Hairloss

Mary's hair is thinning after 5 weeks of chemo, but she is not bald

Jeremy: Mom, how are you feeling? Do you hurt or anything?

Mary: No Jeremy. I'm not hurting at all. I have lost some hair but it doesn't seem to be getting much worse. What do you think? Is it much thinner than last week?

[Mary bends slightly so that he can get a good look at here head, even though he is taller than she is. Jeremy looks at her head carefully]

Jeremy: Nah, not really. It is a lot thinner than it used to be though.

Mary: Well, I used to complain because it was so thick and heavy. Guess I got what I wanted, huh? [chuckling]

Jeremy: [chuckling with her] well, yeah, but this was carrying it a bit extreme don't you think, mom?

Mary: Yes. I agree and I'll do my best to not get cancer again. Besides, the nurse told me that my hair would grow back. Boy. I am never going to complain about having a lot of hair again. END

Read Mary's Story about Lymphedema Symptoms

Mary is at work but her arm feels heavy and she notices that the wristband on her watch is getting snug. She is taking off her watch and her friend Sally, another secretary, notices.

Sally: Hey Mary, are you all right?

Mary: I think so. I don't know. My watch was kind of pinching me. I don't know, by wrist seems to be a little swollen.

Sally: Gee, I wonder what that could be from. Let's see, hold it out next to your other wrist.

Mary stretches out her arms to show Sally her wrists. The left wrist is swollen about _" larger than the right wrist.

Sally: Gee, did you fall on it or anything?

Mary: No. Nothing. It just started to swell and I noticed that my watch was feeling kind of tight.

Sally: Seems like if you sprained it you would have noticed that. Uhmmm (looking closely at Mary's wrists). Pull back your sleeves a bit - it looks a little like your forearm may also be swollen.

Mary pulls up her sleeves and gasps: Oh no, my arm is swollen too. Maybe I got stung or I'm allergic to something? I don't remember hurting myself at all.

Sally: I don't know. I think you should call the urban Indian clinic and see what they say you should do. That's still where you go for healthcare, isn't it?

Mary: Yeah, but the nurse is only there two days a week.

Sally: Well, maybe you'll be lucky and this is one of the days she is there.

Mary calls the clinic. The nurse is not in today. Mary asks for the nurse's phone number at the university. The clinic doesn't want to release it.

Mary says: I need to talk with the nurse and now. I need you to give me the number. If you do not feel like you can give a patient a number where the provider can be reached, then let me talk to the medical services supervisor.

Mary's call is transferred to the medical services supervisor at the urban Indian clinic. Her name is Lizzy.

Lizzy: Hello Mary, the receptionist said that you're having some problems and need to talk with the nurse?

Mary: Yes. Thanks Lizzy for helping me. My arm and wrist are both starting to swell and I need to do something to make it stop. May I have the nurse's phone number?

Lizzy: Are you allergic to bees or anything like that? Or did you fall? Do you think anything is broken? I'm just asking because we may need for you to go to the emergency room.

Mary: No. I don't recall doing anything that would hurt it. It just sort of started swelling.

Lizzy: Well, give me a few minutes to find out where the nurse is working today. You know she works at five different clinics. I'll have her call you. Are you at home or at work?

Mary: I'm at work, but I'm kind of nervous. I'm having trouble typing and my boss needs these invoices done.

Lizzy: Okay, well why don't you put some cool clothes on it while I find the nurse.

Mary: We have a heating pad here from when Sally hurt her back. Should I put that on it?

Lizzy: No, I don't think so. Usually you want to put cool compresses on something that is swelling, but don't use ice. That may be too cold and we don't know what you're dealing with yet.

Mary: How about aspirin to help with the swelling?

Lizzy: No, I'd prefer you to not take anything until you see the provider please. Let me get started on the calls.

Mary: Okay. I'll be waiting and trying to work and get as much done as I can. Mary hangs up the phone.

Sally: What did they say? What's happening?

Mary: Nothing yet. Lizzy is the director and she is really good. She's trying to find the nurse and the nurse will call me. So I guess in the meanwhile, I'll try to get as much work done as I can.

Sally: If you have to leave, I'll stay late tonight to help you finish your work.

Mary: Thank you, but don't the boys have basketball tonight?

Sally: Yes, but Ralph can take the kids and I can meet them at the gym when I get done.

Mary: Thank you a lot. Seems like you've been covering for me for a long time. I'll do the same for you, you know?

Sally: Oh yeah, I know you would. Don't worry about it. I'm just so glad to have you back at work after going through the cancer.

Mary: Yeah, me too. The providers all think I'm going to be fine. Especially since it was caught so early.

Both women go back to work. 40 minutes later the nurse calls Mary.

Doreen: Hello Mary. Lizzy called me and told me you were having some problems with your wrist and arm swelling. Tell me what's happened, okay?

Mary describes the symptoms and no falls or injuries to the Nurse.

Doreen: Uhmmm, okay, Mary I don't have your medical record here, but I had Lizzy pull it to remind me of any problems you've been having lately. You finished your cancer treatment didn't you?

Mary: Yes, I didn't have to have surgery, only chemo. But then the cancer doctor told me she wanted me to also have radiation. So I had six weeks of radiation.

Doreen: Okay, but they didn't remove the lump surgically then.

Mary: No, I didn't want them to cut me.

Doreen: When they did the radiation, was it aimed close to your underarm?

Mary: Yeah. My lump was in the on the outside near the upper part of my breast. My markings for the radiation were pretty close to my underarms.

Doreen: Okay, Mary, do you have a car and can you get to the St. Joseph's Hospital? It is on the east side of the city. Do you know where that is?

Mary: I don't have a car. I can take the bus. Do you know which bus line goes to that Hospital?

Doreen: Let me check (she leaves the phone to go ask the receptionist about the bus routes). Okay, Mary, where are you coming from or do you know which bus lines are close to your work?

Mary: Yes, bus routes 45, 33A, the 110, and the 24.

Doreen: You need to get a transfer from bus route 24 to the 32 going east. The 32 bus route will drop you off at the corner on the same block as the hospital. Can you write that down?

Mary: Yes, I've got it. That's only one bus transfer. Pretty easy. Where do I go once I get there?

Doreen: Ask the receptionist how to get to the "day appointment clinic". When you get there and give the receptionist your name. They'll be expecting you. They'll send you right in to see me, okay?

Mary: Okay, I have to let my boss know I'm leaving, and it will take about an hour for me to get there. Will you still be there?

Doreen: Yes, I won't leave until you get here.

Mary: Thank you for your help. I'd better get started. I'll see you in about an hour.

Doreen: I'll be here. END

Read Mary's Story about Lymphedema diagnosis

Mary is St. Joseph's Hospital to see the nurse, Doreen, who works two days a week at the local urban Indian clinic. While at work, Mary's arm and wrist began to swell and feel heavy. Doreen is gently examining Mary's arm and wrist.

Doreen: I'm glad you were able to get here today and didn't wait until I was back at the clinic.

Mary: Why, is there something wrong? Does this mean my cancer has come back?

Doreen: No, I don't think it is anything serious like that. But, it may be related to the cancer treatment. I think you've developed lymphedema.

Mary: What is that? What does it mean?

Doreen: It is a condition that some breast cancer patients get, but usually only if they had lymph nodes removed or damaged. Since you did not have surgery, but you did have radiation, I want you to show me where they did the radiation please.

Mary, moves her clinic gown to show the markings on her breast that were used to help guide and pinpoint the radiation.

Doreen: Well, it seems rare that this radiation would have damaged much, but it is in line with where most people's lymphatic system runs.

Mary: What does that mean?

Doreen: Well, your body has the blood system that you're familiar with. It also has a less know circulatory system to help drain liquids and fluids from the arms and legs. It is important to fight infections. We need to do a few more tests today, but right now it looks like you have the symptoms of lymphedema. So, it may have been caused by the radiation damaging some of the lymph nodes. They are needed to help drain the fluids. While we do a test in a new machine, called tomography, I want to wrap your arm and have you elevate it.

Mary: I don't have insurance. How much money does this new machine cost and do I really need to have this done?

Doreen: It is helpful to know what we're actually treating. The symptoms look like lymphedema, but I would like the oncologists to check and confirm this. He is currently working with this new machine. The cost of the test can be covered through St. Joseph's Indigent Program. So it won't cost you anything.

Mary: But what does it do? Will it hurt me in any way? Does it take my blood or genes or anything?

Doreen: No, nothing like that. I can show you want it looks like, but it allows us to get a better picture of your tissues to see what may be causing the clogging of your fluid draining away from your arm.

This is what the tomotherapy machine looks like with the cover lifted off of it. The machine allows for spiral pictures to be taken. These help us see soft tissue and to get a better idea of what is going on in your arm. This hospital is using it for a clinical trial to see how it can improve diagnosis of lymphedema. I can send in the outreach worker who can explain it to you so that you can decide if you want to have this test.

Mary: I'm interested to hear more. I don't know that I'll do it though.

Doreen: that is fine. Mark will come in to talk with you and ask him as many questions as you'd like to make certain you're comfortable that you understand everything. Then make your decision. In the meanwhile, I'm going to have the lymphedema therapist wrap your arm and put on some cold compresses. We'll also have you elevate it. How does this sound to you?

Mary: Good. I'd like to know why this just started out of nowhere and I'd like to stop it from getting any worse.

Doreen: Okay, I'll send in both the therapist and Mark. I'll see you a little later.

Mark, the medical assistant comes in, explains what is involved in tomotherapy. He discusses the procedure in more detail with Mary. Mary asks several questions to confirm no genetic specimens will be taken and there is no apparent violation of her traditional spiritual beliefs. Mary signs the consent form for the test and is reassured that the test will not cost her any money. While waiting for the tomography test to be set up for her, the lymphedema therapist wraps her arm. She also puts a cool compress around her arm. She is given a soft pillow to raise her arm so that it is higher than her heart. About 90 minutes later, the nurse comes in to tell her she can come into the tomography room.

Tomotherapy is done, the radiologist and computer specialist read the test results. Mary does have lymphedema. The lymphedema therapist returns to Mary's room and fits her for a couple of different sleeves for her to wear to prevent the swelling from getting any worse. The therapist schedules three weeks of appointments to help treat Mary's lymphedema. END

Read Mary's Story about Advice to Prevent Lymphedema "flare-ups"

Mary has had lymphedema therapy for three weeks through a clinical trials lymphedema diagnostic study at St. Joseph's Hospital. Her lymphedema symptoms are gone and she has full use of her arm. She has an appointment to meet with Doreen, nurse who works two days a week at the local urban Indian clinic and two days a week at St. Joseph's Hospital.

Doreen: Well, you look much happier and better than the last time I saw you (smiling).

Mary: Oh yes. I feel fine. My arm is better and the therapist has been teaching me more about how to take care of my arm so that this doesn't happen again.

Doreen: Good. Prevention is very important, but I want you to understand that there is a lot we still don't know about lymphedema

Helen is a 35 year old woman who has been diagnosed with aggressive cancer, inflammatory breast cancer. This type of cancer makes the breast look red and swollen. The skin near the tumor feels warm. It is a fast-growing type of cancer, so Helen needs to start treatment soon. Her sister and mother both have been diagnosed with cancer; Helen has a 10th grade education. She practices her Traditional Indian behaviors. She lives in urban area and no family close by. She has four children and is divorced from alcoholic, abusive husband; She has had Medicaid insurance coverage. She is very modest, woman and lives 100 miles from cancer center. She has an old car and local phone service most months of the year. She is experiencing a lot of pain from her cancer. She is not a good communicator (but is fluent in English). Helen met with her traditional healer and they prayed together. She did not want to tell her children about the cancer yet.

14 year old = Nina
16 year old = Mathew
18 year old = Patrick
20 year old = Carl

Read Helen's Story About Spirituality

Helen meets Sally at the basket weaving group in the urban Indian center. Here is the conversation that follows:

Helen: Hey Sally: I need some help.

Sally: What's going on my friend?

Helen: I have been doing a lot of praying to get better with this cancer I have been dealing with.

Sally: Are you praying all alone?

Helen: Pretty much. What else can I do?

Sally: I would suggest you call your friends and family to help you with your prayers. You know the prayers of one are good but the prayers of many are very powerful.

Helen: It's hard for me to ask anything.

Sally: I know how THAT can be my friend. I will help make calls and contacts for you.

Helen: You will? Thank you so much my friend. I feel better already.

It is hard for Helen to ask for help and to let others know her personal needs. Which would you encourage her to try if she were your friend and neighbor?

Write down her "dream" list of what she would like to have. When she is comfortable, ask her to share that list with you.
Ask the NACR's phone (303-838-9359) to help her practice what to say and how to say it.
Get a free long-distance calling card from NACR so that she can call her family and talk with them.
Use the "I-messages" in the "communication branch" to help learn good ways to phrase questions
I don't know / not sure

Helen doesn't have any family living close by, but you probably do. Who would you ask for help so that many others are praying for you?

My family
My friends
My religious / spiritual leader
A tribal elder
NACR's phone: 303-838-9359
Other

Read Helen's Story about Her Reaction to her Diagnosis

Helen has just returned from a visit with the local urban American Indian healer to talk about her cancer diagnosis. She is getting out of car just as her daughter is walking home from high school.

Nina (14-year old daughter): Hi mom. What's wrong? You look upset. Where have you been?

Helen: Yes, I am. I've been visiting with Michael (local urban Indian healer) and then with the priest. Then I been talking with the Social Worker at the General Hospital. I been everywhere!

Nina: What's wrong, mom?

Helen: Well, I got some bad news today. I got a disease and I've got to go in for surgery.

Nina: Mama, what's going on?

Helen: Well, I got to go the hospital and get something taken out. And the doctor says I can't wait very long ... that what I've got is going to grow really fast. So I got to have surgery.

Nina: What kind of surgery? Do you have to stay at the hospital or do you get to come right home?

Helen: I got to be in the hospital for about 3 days. They're going to cut on my chest some. I don't know. The Social Worker helped me fill out some paperwork so that Medicaid will pay for the surgery. The hospital is going to take care of me as part of their poor people program. I wonder what kinda doctor they have in that poor people program.

Nina: Mom, I still don't understand. What's going on? What are they going to cut on you for? Are you going to be okay?

Helen: Oh, I got this bad disease and they have to cut out the disease. All this time, I was thinking your daddy would be the one to get cut on. But no, it's me. What did I do wrong that they have to cut me up?

Nina: Well, how much are they going to cut up? And you didn't answer me. Are you going to be okay?

Helen: They don't know how much they gonna cut me. But I talked to Michael about their knives cutting my spirit. He gived me some herb to put in my token bag to help my spirit go back together after they sew me up.

Nina: So when is all of this going to happen?

Helen: I don't know. I got to wait for the Social Worker to get my poor people program paper approved. Then they'll tell me when I get to go in for the surgery.

Nina: Can I stay with you at the hospital?

Helen: I don't think so, honey. I think they'll make you go home at night. Besides, you need to go to school.

Nina: I'm getting good grades. I can miss some school. I'm afraid mom. I don't understand what is going on.

Helen: Well, I got to think on it some more. I don't understand it too good either. All I know is they gonna cut on me. I don't like it. But both Michael and the priest say I got to do it. So, I guess I will. Sigh.

Read Helen's Story about Clinical Trials for Inflammatory Breast Cancer

She lives in the city and must rely on Medicaid to help her get help. She has a lot of trouble talking with the woman from Medicaid. Helen normally has trouble asking others for help, but especially to a non-Native stranger. After having problems with the Medicaid office, she calls the NACR Native Patients Navigators (Native Sister). Terri, a Native Sister, talks with her about her situation. Terri also calls and talks with the woman from Medicaid who had talked with Helen earlier. Terri explains the situation and helps fill out the paperwork for Helen to get treatment services. Terri also mails Helen a long-distance calling card to help her make calls to the cancer center (100 miles away).

Terri finds out that there is a cancer treatment trial for the type of cancer Helen has. It is a trial that uses three different chemo drugs that are the standard treatment. These three drugs are used for the women who are in the control group. The "experimental" group for this trial also uses the same three chemo drugs as in the standard treatment. But it also uses a new 4^th drug with the 3 other drugs to see if the 4^th drug makes the 3 drugs work better.

Helen has a lot of questions. She has been told that these "trials" are "studies" and believes that she will only be given a sugar pill (or placebo).

Is it true that in cancer treatment clinical trials the participants who are in the control group are only given a sugar pill (or no real drugs or treatments)?

This is not true for breast cancer treatment trials. At the present time there are only comparisons between a standard treatment with a treatment that is thought to possibly be better than the standard treatment.

Helen is worried about the costs of this trial. She doesn't know how she could pay for the drugs or the appointments. Terri talks with the Medicaid woman and learns that the office visits can be paid for by Medicaid. Terri also talks with a woman from the "Medicines for you" web site. They were not able to help since these were drugs included in a clinical trial. Terri then called the Pharmaceutical Companies that make these drugs. After several phone calls, they agreed to give Helen the drugs as part of the clinical trial for free. Terri calls the Cancer Center to set up an appointment for Helen to talk through some of the informed consent issues for the next day.

Helen is going to need someone to drive her to the cancer center to discuss the clinical trial. It has to be soon because she needs to be enrolled in the trial within 14 days of her diagnosis. She calls her 20-year old daughter who lives on the Rez. Her daughter agrees to drive to the city, pick up Helen and drive her to the Cancer Center the next day for her appointment.

Helen is nervous and hasn't been able to tell her daughter much about her cancer during the drive. After they reach the cancer center, Helen calls the toll free number to talk with Terri. She has her daughter listens in on the pay phone at the hospital. Terri agrees to be close to the phone during the time of the appointment in case the study recruiter, Helen or her daughter needs help talking with one another.

Helen and her daughter meet with the study recruiter, Margaret. Margaret explains what will happen to Helen if she decides to take part in the study. She includes the potential benefits and risks of taking the 3 chemo drugs and the 4^th new drug. She also explains that Helen will need to come in to the Cancer Center every day for the first 7 days.

Helen and her daughter cannot afford to pay for the gasoline to drive back and forth 200 miles each day for 7 days. They call Terri. Terri finds them a hotel for free that is close to the Cancer Center. They can stay there for a week.

The daughter calls her auntie, who is raising the younger children (14, 16, and 18 year olds) on the Rez. The auntie agrees to talk with the children about Helen and the cancer. The daughter also calls her neighbor to have her watch her children while she is at the Cancer Center with her mother for the next week.

Now that the lodging and the family concerns are taken care of, Helen says she wants to do the trial. She signs the consent form.

Helen and her daughter go check in at the hotel. They call Terri and ask her to help them decide what questions they should be asking before starting the trial the next day. Terri gave them a list of questions other Native patients have asked their providers.

Which of these questions would you want to ask if you were Helen?

Will the treatment make me sick?
How do I know I am really getting medications and not just being experimented on?
Will the drugs make me sick?
What can I do to not get nauseous / or have an upset stomach?
What types of foods should I eat during the treatment?
What types of drinks and how many should I drink while I am taking the treatment?
Will my hair fall out?
How will the drugs make me feel (e.g., tired, depressed, sick)?
After the first week of treatment is over, when do I need to come back?
Is there any special way I need to prepare for my next appointments?
How often will I need to return to the Cancer Center?
About how long is each appointment when I have to return?
If more drugs are prescribed by the provider, how may I get them for no cost?
Am I likely to survive this?
How soon before I start to feel better?
How soon before I quit worrying about dying from this cancer?
What should I tell my children?

Read Helen's Story about Communication

Helen gets into Sally's car.Her friend Sally from the basket weaving group at the urban center is going with Helen to her appointment.

Helen: Good morning Sally. I appreciate you coming with me. But we could use my car.

Sally: Good morning, Dear Sister. No, that old Ford is good for short drives, but we don't want to take it on the freeway all the way to the clinic. How are you feeling today?

Helen: I feel a little nervous. I don't think I really need to go. I think I can ask the Creator to heal me. I think maybe we should go gather more materials for our baskets from the hills outside of town and just come home.

Have you ever felt that way? That you wanted to do just about anything else other than go to your cancer appointment?

1. No, I always wanted to go and find out what was happening

2. No, I didn't want to go, but I always tried to make my appointments

3. Yes, and I tried a few times to make excuses to not go

4. Yes, I usually tried to find something else to do so that I didn't have to go

5. Don't know / not sure

Sally: We can get some more basket materials on our way home if you still feel like you can climb the hills. But, my sister, I need you to be well again. We need to see the doctor.

Helen: I don't know this doctor. He doesn't know me either. How can he help me?

Sally: Well, I don't know. I know that this cancer is a hard disease and that you've got a type that needs western medicine as well as traditional medicine.

Helen: I don't see why. Nothing is as strong as the Creator. If I am meant to be healed, the Creator will heal me.

Sally: The Creator will decide what will happen. But He has also given this doctor knowledge to help you. The urban center got you on Medicaid to help pay for everything. I think this would not have happened if the Creator did not want you to visit the doctor and let him help you.

Helen: Hummm

Sally: Well, Marilu from the Center spent a lot of time filling out the papers for you to be on Medicaid. A lot of others never were approved for Medicaid. This must mean something.

Helen: Hummmm. But maybe the Medicaid should be used to help them and not be wasted on me. Maybe there are children who need the Medicaid more than me? Aren't I taking from them by doing this western medicine?

Sally: No, I don't think so. There are other types of programs for the children. You are important to the Center. Your children also need you even though they aren't living with you. When do Nina and Mathew come home from Boarding School?

Helen: They get out for school break in about two weeks. I really miss them. But the school has been really good for them. They weren't doing well here in the city.

Sally: Have you told them yet about this disease?

Helen: No, I don't want to worry them. Any I am still afraid that if I tell them, they may get this too. I don't want to give it to them.

Sally: Well, I think we should make a list of questions to ask the doctor. Like, can you spread this disease to your children? I don't think so, but think we should ask him.

Helen: Okay, that is a good question; I don't want to ask it, okay?

Sally: [chuckling] Oh, I see, you want me to ask the questions?

Helen: [chuckling too]. Well, I'm not going to do it.

Sally: Hummm. I think maybe we should practice some questions. We've got a long drive. What do you want to know from the doctor?

Helen: Will you come in with me?

Sally: Yes. I will be there the whole time. When I talked to the Native Survivors' Support line the lady told me that I would have to have you fill out some paperwork called HIPAA. This paperwork says that it is okay for me to be with you and to hear you're your private information. You have to sign that for me to be able to be with you. Are you sure you want me to hear everything.

Helen: Oh yes. I don't understand a lot of what they say to me and maybe you can help explain it to me.

Sally: Well, I'll help when I can, but this is all new to me too. But together we'll figure it out.

Helen: Will you ask them the questions then?

Sally: My son printed out a list of the questions and also that part of the website about the "I messages". That Native Advocate (from the phone call) was right. This really seems an odd way to talk to a provider. But she said that providers don't understand the way we ask questions. I practiced saying some of them and they feel odd. But if that is what it takes for you to get better care, then I think we should try it.

Helen: hummm -. I don't know why. The Traditional Healer would understand what I'm saying, why can't a Western healer.

Sally: Well, the Western healer and traditional healers work differently and they talk differently. So since we're going to see the Western healer, we need to practice talking the way he can understand. Like you said, he doesn't know you at all. But you need his help. So what do you want to know?

Helen: Oh - I don't know. Nothing. Just do it and let me come home.

Sally: Okay, get my purse please and pull out the papers in it. That is what my son printed out from the website. Take a look at the questions and see if there are any there that you'd like to know the answer to. Go ahead and circle it.

Helen: Oh, I just don't want to do this.

Sally: I know, but try to circle at least five questions then read them to me, okay? I can't read them because I'm driving.

Helen: (big sigh) [time passes as she reads a few questions then stares out the window]. Finally she turns to Sally and says: okay, I guess I want to know ask the provider if he is going to cut off my breasts.

Sally: Ohhh - (uncomfortable -pause) - Yes, that is a good thing to know. How is the question written out there?

Helen: hummm - it says, "Will you be able to just take the lump out or will you have to take my breasts? Both or only one?"

Sally: Yeah, that's a good question. What other question have you marked?

Helen: "How long will the operation take?" I also circled, "How long will I be in the hospital?"

Sally: Those are good questions. What else?

Helen: "How soon after the surgery before my traditional healer can visit me and help me?"

Sally: Oh yes, these are very good questions.

Helen: you looked at these questions too. Were there some that you think I should ask?

Sally: Well, my son helped me look at some of the information from the website and there was that section on the "I messages" that at first I felt was really strange. But then he and I did one of the exercises and it had a question that I think we need to add. But only if that is okay with you.

Helen: what was it?

Sally: Okay, wait it is on the back of the sheets we printed out. I starts out with something like, "I feel uncomfortable -"

Helen: [turns the sheets over and reads the "I message"]. "I feel uncomfortable when you use big words because I don't understand you. I need you to use smaller words or write them down for me, because I am trying to get healthy again."

Helen: Oh, I couldn't say that. What if he gets mad at me and won't give me good treatment?

Sally: He won't get mad. But if you want I'll say that one so that we both understand -.. Because I don't understand the medical words either. [She smiles]

Helen: [smiles back] Okay, so we'll both sound dumb in there - [giggles].

Sally: [laughing]. No, that doesn't make us sound dumb. We'll sound like we know what we want from him! And besides, if he was trying to understand us, he would sound just as "dumb" - [giggling]

Read Helen's Story about Daily Needs

Her friend Sally from the basket weaving group at the urban center is going with Helen to her appointment. Helen gets into Sally's car.

Helen: Good morning Sally. I appreciate you coming with me. But we could use my car.

Sally: Good morning, Dear Sister. No, that old Ford is good for short drives, but we don't want to take it on the freeway all the way to the clinic. How are you feeling today?

Questions for the Reader: Have you ever felt that way? That you wanted to do just about anything else other than go to your cancer appointment?

1. No, I always wanted to go and find out what was happening

2. No, I didn't want to go, but I always tried to make my appointments

3. Yes, and I tried a few times to make excuses to not go

4. Yes, I usually tried to find something else to do so that I didn't have to go

5. Don't know / not sure

Sally: We can get some more basket materials on our way home if you still feel like you can climb the hills. But, my sister, I need you to be well again. We need to see the doctor.

Helen: I don't know this doctor. He doesn't know me either. How can he help me?

Sally: Well, I don't know. I know that this cancer is a hard disease and that you've got a type that needs western medicine as well as traditional medicine.

Helen: I don't see why. Nothing is as strong as the Creator. If I am meant to be healed, the Creator will heal me.

Helen: Hummm

Sally: Well, Marilu from the Center spent a lot of time filling out the papers for you to be on Medicaid. A lot of others never were approved for Medicaid. This must mean something.

Helen: They get out for school break in about two weeks. I really miss them. But the school has been really good for them. They weren't doing well here in the city.

Sally: Have you told them yet about this disease?

Helen: No, I don't want to worry them. Any I am still afraid that if I tell them, they may get this too. I don't want to give it to them.

Sally: Well, I think we should make a list of questions to ask the doctor. Like, can you spread this disease to your children? I don't think so, but think we should ask him.

Helen: Okay, that is a good question; I don't want to ask it, okay?

Sally: [chuckling] Oh, I see, you want me to ask the questions?

Helen: [chuckling too]. Well, I'm not going to do it.

Sally: Hummm. I think maybe we should practice some questions. We've got a long drive. What do you want to know from the doctor?

Helen: Will you come in with me?

Helen: Oh yes. I don't understand a lot of what they say to me and maybe you can help explain it to me.

Sally: Well, I'll help when I can, but this is all new to me too. But together we'll figure it out.

Helen: Will you ask them the questions then?

Helen: hummm -. I don't know why. The Traditional Healer would understand what I'm saying, why can't a Western healer.

Helen: Oh - I don't know. Nothing. Just do it and let me come home.

Helen: Oh, I just don't want to do this.

Sally: I know, but try to circle at least five questions then read them to me, okay? I can't read them because I'm driving.

Sally: Ohhh - (uncomfortable -pause) - Yes, that is a good thing to know. How is the question written out there?

Helen: hummm - it says, "Will you be able to just take the lump out or will you have to take my breasts? Both or only one?"

Sally: Yeah, that's a good question. What other question have you marked?

Helen: "How long will the operation take?" I also circled, "How long will I be in the hospital?"

Sally: Those are good questions. What else?

Helen: "How soon after the surgery before my traditional healer can visit me and help me?"

Sally: Oh yes, these are very good questions.

Helen: you looked at these questions too. Were there some that you think I should ask?

Helen: what was it?

Sally: Okay, wait it is on the back of the sheets we printed out. I starts out with something like, "I feel uncomfortable -"

Helen: Oh, I couldn't say that. What if he gets mad at me and won't give me good treatment?

Sally: He won't get mad. But if you want I'll say that one so that we both understand -.. Because I don't understand the medical words either. [She smiles]

Helen: [smiles back] Okay, so we'll both sound dumb in there - [giggles].

Sally: [laughing]. No, that doesn't make us sound dumb. We'll sound like we know what we want from him! And besides, if he was trying to understand us, he would sound just as "dumb" - [giggling]

Read Helen's Story about Diabetes and Diarrhea

Helen talking to her friend Shirley about her diabetes and diarrhea.

Helen: Shirley, I've been having a terrible time.

Shirley: What's the matter?

Helen: It's kind of embarrassing to talk about, but I've been having the runs. Doesn't matter what time of day. It's awful.

Shirley: Oh, I'm so sorry to hear that. I guess I was really lucky that I missed the diarrhea. I had plenty of other side effects from my chemo, though.

Helen: They gave me some pills at the clinic, but I don't like to take them, because they make me feel funny. Besides, you know how I feel about pills.

Shirley: Remember all that stuff they give us before we start treatment? I think there was some-thing in there about diarrhea and what you can do. Let me go see if I can find mine.

Helen: Oh, anything that would help would be great.

(friend returns)

Shirley: I found it. Listen to this. It says to eat starchy things like toast, rice, plain noodles, applesauce and starchy vegetables, like potatoes, carrots, and sweet potatoes. It says not to drink milk (can you drink milk? I heard a lot of Indians can't drink milk anyway.) Milk or things made with milk can cause diarrhea or make it worse. So I guess you shouldn't have any pudding either. But it says you can have cottage cheese and yogurt (yuk! I hate yogurt). How does that sound? Anything sound good?

Helen: It all sounds good, especially the potatoes. I've been afraid to eat, afraid it would cause more diarrhea. I think that may be why my sugar's down.

Shirley: I forgot about the diabetes. Maybe you should go see the doctor about that low sugar.

Helen: No, my appointment's not for six more weeks.

Shirley: Oh, no, this is different. Those every 3 month appointments are just check-ups for when everything's going fine. You need to go to the clinic and let them know you're having this diarrhea and your sugar's low, probably because you're not eating much.

Let's give them a call and I can take you over. END

Heather is a 48 year old woman who is in a long-term, happy lesbian relationship. She has two children from an earlier relationship. Her parents and children are not supportive of her lesbian life style and she has had little contact with the family over the last 10 years. She completed 1 year of junior college. She works full time as a waitress, but no health benefits are provided by her employer. She has no private insurance, nor is she covered by her partner's insurance. She lives in rural area, but not on a reservation and is not eligible for IHS services. She has her own car (1995 Chevy). She has both local and long distance phone services. She was diagnosed with stage 2 breast cancer 6 years ago, was treated and went into remission. She now has recurrent disease to the skin and the bone. She is a sober, recovering alcoholic. She is a good communicator and assertive about her personal needs. She land her lesbiar partner, Shirley, lives 60 miles from the closest cancer center. She talked with her partner about her recurrent cancer diagnosis. She is worried about treatment that may affect her status as a sober alcoholic. Heather calls the Cancer Information Service to get their help.

Question to the Reader: Do you think most cancer treatments would hurt her sobriety?
Answer: Cancer treatment drugs do not cause a "high" effect and there is no reason for the treatment drugs to have any effect on her sobriety.

Names and ages of her children
24 year old = Marianne
28 year old = Bobbi

Read Heather's Story About Medicaid and Communication

Heather and Shirley are sitting in the living room at home discussing her recurrence of breast cancer. Shirley gently holds Heather.

Heather: [sobbing] I thought all of this was over! After all we went through six years ago! The doctors said they thought they caught it all. This is horrible. I don't want to go through this again.

Shirley: I understand but we've got to do it. You've got to do it to live.

Heather: But it is in the bone? Doesn't that mean I am dying? And my kids and parents don't even care. What is wrong with them?

Shirley: We don't need to deal with them right now. First we have to find a way to get you into the best care that we can. I can call your family later just to let them know what is happening.

Heather: No. Remember last time they blamed the cancer on us being two-spirited and gave us all that guilt crap. I do want them to know, but I can't deal with their looking at us like we're some type of perverts. We've been happy together for 10 years. And look: Marianne's been divorced once already and Bob's been divorced twice! Who are they to judge us?

Shirley: You know how I feel about them. It is their loss to not have had you in their lives the last ten years. It's been my blessing that we're together.

Heather: But what are we going to do? I don't have insurance but earn too much money to be eligible for Medicaid. Course, I guess I won't be able to work as many hours once I start the chemo again. What am I going to do?

Shirley: Let's go back to the clinic and talk with the Social Worker.

Heather: That's more than an hour drive away. I don't want to do it today.

Shirley: Okay, I'm going to call the clinic and try to schedule an appointment with the Social Worker for tomorrow.

3 days later, Heather and Shirley walk into the Social Worker's Office for their appointment.

Social Worker: [smiles] Please sit down. You must be Shirley [shakes her hand] and you must be Heather [shakes her hand].

Heather: How did you know that?

Shirley: I told her that you had long hair and I was skinny.

Heather: Oh, okay. I'm glad you didn't describe me as the one who looks like she's got cancer. [smiles]

Shirley: You just look tired. Other than that, you look fine.

Social Worker: Okay, how can I help you?

Heather: I need help to pay for my cancer treatment because my job doesn't include health insurance and I don't make much money. I need to get the best care I can so that I can survive cancer a second time.

Social Worker: Well, how much money are you making now?

Heather: I make $32,000 with tips. I'm a waitress.

Social Worker: But that is working full time, isn't it?

Heather: Yes. And I got so sick the first time I had cancer six years ago from the chemo, that I know I won't be able to keep working full time. But I've got to work. I asked the Medicaid person if I was eligible for Medicaid and she said I made too much money.

Social Worker: Are you supporting any children?

Heather: No. Shirley and I are a couple and we live alone.

Social Worker: Do you own a house or car? Have a savings account? Or do you have any investments?

Heather: I have a 1995 Chevy. We rent our house out in the country. I have about $200 in my savings account. And, no, I've never had enough money to invest in anything.

Social Worker: Did you tell the Medicaid person all of this?

Heather: No. Once she heard my salary she said I wasn't eligible and just sent me out of her office. She was real cold.

Social Worker: Well, off the record this type of thing happens a lot. No matter which type of government program you apply for, you are automatically said to be "ineligible". You almost always have to apply twice to get into the system. So, don't be discouraged yet. did you bring the Medicaid application with you?

Shirley: Yes, I did. But this is the only copy I have.

Social Worker: Let me go make a copy. I'll be right back.

[About 10 minutes pass]

Social Worker: Here is your original. Always keep a full copy of any forms you turn into any office or agency. [She looks at the application]. Okay, we are going to re-do the forms together and I am going to need your help.

Heather: You mean you think I can qualify for Medicaid?

Social Worker: I think so. There also are some other programs that may also be able to help you pay your medical bills and your rent.

[Heather hugs Shirley] Oh, you were right. We are going to get some help!

Read Heather's Story about Spirituality

Heather just had an unusual experience with her animal spirit, the turtle. She shares her story with her partner, Sylvia, and the conversation continues like this:

Heather: Do you have an animal spirit that helps you?

Sylvia: What is an animal spirit?

Heather: It's a special animal that means a lot to you. You feel closer to it than any other animals. You may have seen it in an unusual place or have a special feeling or connection when you see it. Sometimes comes to you in a dream.

Sylvia: I do have a big white bear comes to me in my dreams. It once gave me a special gift. I felt very close to this bear, like it was talking to me. It has come to me in my dreams several times after that. Is this my spirit animal?

Heather: It could be. If you feel it is speaking to you it probably is. I would suggest you listen to its message to you.

Sylvia: I do. It is a very special animal to me. Thanks.

Read Heather's Story about Side Effect: Hairloss

Heather has been going through chemo for about 10 days. She has continued to work at her waitress job while getting her treatments. Her partner, Dorothy, has been supportive of Heather while she has been dealing with side effects from her chemo.

Heather [getting out of the shower]: I think my hair is beginning to fall out. How am I going to work at the cafe

Dorothy: Well, the nurse told us you were probably going to lose some or all of your hair. Why don't we cut it off. It may not seem so drastic that way.

Heather: But my hair is supposed to be long to show respect for motherhood. Since my own kids have been so bad to us (because of being lesbian), I really didn't want to lose my hair. Plus what am I going to do without eyebrows and eyelashes if they fall out too?

Dorothy: Okay, if you don't want to cut your hair and it is beginning to look like it is starting to fall out, how about if we check into getting you a wig? Since you've still got most of your hair, we can match your hair color pretty well. If anyone at the cafe says anything, you can just say you tried coloring your hair.

Heather: Yeah, but I don't have any money to pay for a wig and with no insurance, can't get one that way either. I think I'd like one.

Dorothy: Do you remember those women who rode their motorcycles to raise money for the Komen breast cancer group? Remember? They were both straight and gay. One of them, Janet, was telling me that they had cut their hair to donate for wigs for children with cancer. I bet we could get some hair from their organization and have a wig made for you. Or better yet, since you're just starting to lose your hair, let's cut it and see if we can have a wig made you're your own hair? She said there was another group of wig-makers who volunteered to make wigs for cancer patients who can't afford them. We can get you one right away from the American Cancer Society and then when your wig is ready, you can wear one with your own hair.

Heather: Yeah, I've been thinking about it. You know I didn't tell you what that Indian woman from the support said to me. She said, "Oh, it won't matter if you lose your hair because you're gay. You can just do a butch hair cut or something. Don't you two trade off who is being the male and who is being the female any way?" Oh, she was so mean. She made me so mad. I'm so sorry she found out about us. I told her, "No, we don't trade off being male or female. We both like being women. And we both like having our hair."

Dorothy: No, you didn't tell me. I'm so sorry. She is just a mean, angry old woman. She just likes to hurt other people. She behaves in a bad way and she doesn't matter to us.

Heather: I just know I am going to feel so out of balanced without hair. I can't explain it. I feel like I'll be stripped naked in public or something. I'm so afraid of this. I go to work and I just forget that I've got cancer, but when I lose my hair, how can I pretend or forget about it. It is just depressing.

Dorothy: then how about calling into work and let them know you'll be a few hours late. Let's go down to the American Cancer Society and talk with them about wigs. They'll help us.

Heather: Yeah, okay, I guess I will.

Read Heather's Story about a Clinical Trial for Recurrent Breast Cancer

The woman from the Cancer Information Service tells Heather about a study for women with recurrent breast cancer. It is a clinical trial that uses a chemo drug, "Anastrozole". The Control group on the trial uses "Anastrozole" and the Experimental group uses both the "Anastrozole" and a new drug, "Fluvestrant". Heather"s recurrent disease is in her bones, but not her spinal column. The Cancer Information Service woman thinks that Heather may still be eligible to take part in the study, but she needs to call soon.

Her partner is very supportive and has agreed to take off work to drive Heather in for the treatments. Heather calls up the Cancer Center to talk with them about taking part in the study. The Cancer Center schedules an appointment for both women to come in to discuss taking part in the study. The Cancer Center recruiter is concerned because Heather has no insurance and also is not eligible for IHS Contracted Health Services. The Cancer Center has never had a Native Americans take part in a cancer clinical trial, and they decide to cover all of her costs (for the medications, parking fee while at the Cancer Center and so on).

Question: Heather has some questions she wants to ask the providers. Which of these questions would you also want to ask if you were Heather?

How do I know I am really getting medications and not just being experimented on?
Will the drugs make me sick?
What can I do to not get nauseous / or have an upset stomach?
What types of foods should I eat during the treatment?
What types of drinks and how many should I drink while I am taking the treatment?
Will my hair fall out?
How will the drugs make me feel (e.g., tired, depressed, sick)?
Can my partner stay in the room with me while I am being treated or will she be at risk in any way?
How successful has this treatment been for other women with cancer that has spread to their bone and skin?
After the first week of treatment is over, when do I need to come back?
Is there any special way I need to prepare for my next appointments?
How often will I need to return to the Cancer Center?
About how long is each appointment when I have to return?
If more drugs are prescribed by the provider, how may I get them for no cost?
Am I likely to survive this?
How soon before I start to feel better?
How soon before I quit worrying about dying from this cancer?
Should I tell my children anything (they do not approve of her lesbian relationship)?

Read Heather's Story about Diabetes Meds during Treatment

Daughters, Marianne rand Bobbi recently reconciled with her mother. She is talking to the Heather about her increased blood sugar due to chemo meds.

Marianne: Hi, Mom. What's the matter? You look really upset this morning.

Heather: My sugar! It's my sugar. It was 223 this morning. It's never been that high. Yesterday it was 194. It's just been creeping up this week. I'm hardly eating anything, cuz I'm not really hungry. I'm taking my sugar pills. I don't get it.

Marianne: So what did you have for breakfast?

Heather: I didn't feel like much. Just a piece of toast and my black coffee.

Marianne: And supper?

Heather: You know, your sister (Bobbi) was here and made me some bacon and eggs. It didn't smell good to me, but I had a few bites.

Marianne: You're not sneakin' any doughnuts, are you? Sounds to me like we need to call the nurse - or just take you over to the clinic.

Heather: No, I don't want to go to the clinic. They'll just be mad at me, cuz my sugar's so high. I've always worked so hard to keep my sugar down.

Marianne Hey, Mom. Remember, they said this might happen with your chemo. Sometimes the medicine makes your sugar go up. So we need to go see your doctor, let them know what's going on and they can help us fix it. It's probably just your chemo. But let's get it taken care of before it gets any higher.

Marlene is an 80 year old widow. She has nine children, 14 grandchildren and 3 great-grandchildren. She lives with her daughter on the reservation. Her daughter has her own truck (1989 Chevy) and drives Marlene wherever she needs to go. She has local phone service only (no long distance services). She has an 8th grade education. She is very traditional and very modest. She is fluent in her Native language and has limited English speaking skills. She is eligible for and uses the local IHS clinic for her healthcare. She has no other insurance and has never applied for Medicare. She is diabetic and was diagnosed with stage 3 breast cancer. She lives 200 miles from nearest cancer center.

Names and ages of 9 children;
40 year old = Cecelia (lives with Marlene)
55 year old = Kathy
56 year old = Lisa
59 year old = Terri
59 year old = Rick
61 year old = Earl
63 year old = Paul
64 year old = Sharon
65 year old = Stacey

14 Grandchildren: (only 3 identified)
28 year old = June (Cathy's daughter)
5 year old = Summer (Rick's daughter)
38 year old = Paula (Paul's daughter)

Read Marlene's Story about Spirituality

Granddaughter Jennie finds her Grandma Marlene sitting by the river alone. Their conversation goes something like this:

Jennie: Hello Grandma! What are you doing? Am I bothering you?

Marlene: No, Granddaughter, come sit with me. I am doing a little ceremony.

Jennie: A ceremony? (puzzled) I thought ceremonies needed to be done by a medicine person.

Marlene: Yes, some ceremonies do but this one I can do myself.

Jennie: You can? What do you do?

Marlene: Well, with this one I'm using this tobacco (she takes a pinch of loose tobacco and lifts her hand to the sky). I hold it and say my prayers for myself. Sometimes I sing my prayers.

Jennie: Sing your prayers?

Marlene: Yes, sometimes my prayers are my songs.

Jennie: Oh (said in awe)

Marlene: As I pray or sing my prayers I know they are going into the tobacco. Once I'm done I leave them with the Creator. I drop a little bit of the tobacco in the four directions.

Jennie: Oh, you mean the north, south, east and west?

Marlene: Yes, to the spirits of the four sacred directions. Then I am done. I have left my prayers to the Creator with my own little ceremony. Now I feel much better.

Jennie: Gee, can I do that too?

Marlene: Sure you can. You can do it this way or your own way. It's very simple. Just listen to your heart and it will show you. If you follow your heart you will ALWAYS do it right.

Jennie: I need to do this. Thank you, Grandma. END

Read Marlene's Story about Cancer Pain

Marlene's breast cancer has recently spread to the bone. She is currently undergoing chemotherapy for her breast cancer and radiation therapy for her bone pain in her right hip. Marlene also has arthritis and diabetes.

Marlene said that before her cancer diagnosis she had some discomfort in her hands. She also has some numbness and tingling in her feet that she was told by her provider was from her arthritis and diabetes. When she was most recently talking with the doctor, he asked her to describe her pain and rate it.

Marlene was unsure what the provider was asking her to do. She said, It is not that it is bad, but I get a knife-like pain in my back when I pick up my great-grandson and put him on my lap. I am so proud of him and he is so cute and cuddly.

The doctor said, It sounds like you have different types of pain. You mentioned earlier that you have some discomfort in your hands, and that have some tingling in your feet. You also have some sharp or knife-like pain. I think we need to give you more than one type of pain medication.

Marlene is uneasy about this. She had a friend who is now on the other side who told her these drugs were really bad. Her friend got really sick and confused with the medicines. Marlene is afraid of the side effects of the pain medicine.

Marlene talks with her provider about having pain and her worries about taking the pain medicine. The provider tells her that most side effects can be prevented or will go away with time.

The provider writes a prescription for a narcotic and for a medicine to treat the pins and needles feelings in her hands and feet. The provider tells Marlene exactly how to take the medicine and about the possible side effects.

The provider also told Marlene that the nurse would check on her in a day or two to make sure she was not having any problems taking her pain medicine. Marlene took the pain medicine as she was told. The pain became much less and Marlene was able to pick up her grandson and do her daily chores. The only side effect she had was constipation and she was able to manage that using the ideas provided by the provider.

Read Marlene's Story about Treatment

Marlene is sitting with four of her adult children and three of her teenage grandchildren. Cecelia (the daughter who lives with Marlene on the reservation) talking to the rest of the family: We went to the doctors today again and he told us that mom really does need to have surgery. She may also need to have radiation or chemo. They are going to schedule her surgery sometime next week.
Earl (son): Does the doctor know about your diabetes? Do you have to do something special because of your diabetes?

Cecelia: I forgot to tell the cancer doctor about her diabetes. I just thought they would know.

Sharon (daughter, a nurse): No, the cancer doctor probably doesnt know anything about her diabetes. We need to tell him because she needs to not get any infections. Also, some of the drugs that shell be on affect her circulation. Diabetes also affects her circulation.

Cecelia: Well, I think you should come with us for the next appointment so that you and the doctor can talk about how to help mom.

Marlene: Yeah, I would like you to come too. He used a lot of those medical words and I didnt understand a lot of what he was saying.

Paul (son): Thats a good idea. Can you get off work?

Sharon: I dont know, but I guess Ill have to. Mom, do you understand what type of surgery he is going to do?

Marlene: No, I was so tired by the time we got there. It took five hours to get there and I just was tired. He seemed real nice, but I just didnt understand what he was saying. I just wanted to take a nap.

Rick (son-in-law): but mom, I thought you were going to spend the night with Stacey half-way instead of doing the whole drive in one day?

Cecelia: Yeah, we were, but Staceys kids had the flu so we didnt want mom to get sick from them.

Marlene: Yeah, but I wanted to stop anyway.

Sharon: Well, were going to have to get all of the family to make certain theyre not sick when theyre around you for a while. I can get some masks from the pharmacy that we can wear if we think we may be coming down with something. Mom, what type of surgery are they going to do on you?

Marlene (shrugs): I dont know. I think hes going to cut off one of my breasts.

Cecelia: Yeah, and he may need to cut off the other one. He says he wont know until he does the surgery.

Marlene: Yeah, here all this time Ive been worried about losing toes from diabetes and instead the cancers taking my breast.

Kathy (daughter): So how long are you going to be in the hospital? Is there someplace close to the hospital we can stay too?

Sharon: The tribe has an agreement with that hospital and a hotel down the road from it. The tribe lets family stay in that hotel that is paid for by the tribe. But we need to talk to the tribal health center to get it all set up. How many should we have go? Cecelia, youll be going, right?

Cecelia: Yeah, I want to be there.

Marlene: I need Cecelia. Id like to have you Sharon too so that you can talk to the doctor and explain what he is saying to me. He talks too fast and uses too many big words. Maybe one or two of you boys too. You can help pray and if I need help getting up or down, okay?

Rick and Earl: Dont worry mom, well be there.

Earl: I'll drive us all down in the big Ford. Then well all be together.

Marlene: okay. END

Read Marlene's Story about Ceremony for Lymphedema

Marlene and her daughter Cecelia (lives with Marlene on the reservation) are at the tribal clinic. Marlene is getting a gentle massage to help drain the extra fluids trapped in her arm. Patty, the Nurse Practitioner (NP) at the clinic who has worked with a lot of breast cancer patients has asked Sharon (Marlene's daughter who is a nurse at the clinic) to meet with her briefly.

Patty: Well, Marlene looks pretty good, but that arm swelled up pretty fast. I think she's going to do pretty well. But I want you to review the list of things she cannot do with that arm and make certain you understand everything or if you have any questions.

Sharon reads the list carefully.

Sharon: No, I think it is very clear. I will meet with the rest of the family and go through the list so that we all know what we need to do to help protect her. She won't like some of the things. You know she still likes to bring in wood for the fire in the house. She also helps gather the wood for ceremony.

Patty: Well, from now on, when she wants to help gather the wood, she needs to wear protective long sleeves and carry a basket in her good arm to put the wood in. She cannot hold it in her arms any more because she is likely to get a splinter. She is at high risk for an infection; even when her arm is not swollen. An infection will set up another episode of the lymphedema.

Sharon: Okay, I'll explain that to the family. We can all help.

Patty: Good. Now, I know your mom does some ceremony that includes cutting the skin. From now on, that can only be done on other parts of the body, but not on this arm. You can tell the healer and if wants to know more about how to protect her, just ask him to drop by the clinic or to call me and I'll go by his house to talk with him.

Sharon: Sure. He's at the gathering and I can talk with him if we are able to go back to it tonight.

Patty: Great. And if I see him tonight, I'll also let him know I'm there and available to talk with him.

Sharon: Thanks.

Read Marlene's Story about Fatigue

Marlene has her pain under control and even though she has fatigue, she still wants to be a help to her family. Her granddaughter, who lives nearby on the reservation, has just had a baby and Marlene knows she hasn't been getting much sleep. Her daughter Cecelia, who lives with Marlene, has been helping, but Marlene wants to help, too.

Marlene: I really want to help Caren with the baby, but I am so tired. There has to be something I can do.

Cecelia: Yes, Caren is tired, too, but it's not the same kind of tired you are feeling. The baby doesn't sleep much. Caren knows you want to help.

Marlene: (frowning): I know, but that's what family should do, help out. I want to make some booties and hold the baby and let Caren sleep. My pain is better and I know I can't do much with this arm, but...

Cecelia: Mom, it's okay. Everyone knows how tired you are and that you can't help it. Some think it's just because you are old, but the family knows it's because of your cancer and cancer treatment.

Marlene: Do you think there is something I can do to help? Could Caren come here with the baby? I can't lift him, but I could watch him and you could help me if he cries. Maybe I can hold him if you put him in my arms.

Cecelia: We could ask Caren, maybe she would like that. I know she's wants him to know his great-grandmother.

Marlene: (smiling): That would be good; it might even make me less tired, to think I can help Caren and the baby. END

Read Marlene's Story about her Clinic Visit and Lymphedema

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. END

Read Marlene's Story about her Lymphedema Sleeve

Sharon: Thank you for helping my mom and our family.

Patty: I'm glad to help. She is such an amazing woman.

Sharon (smiling): Yes, she is. Now, what is this I am supposed to do about an elastic sleeve for mom?

Patty: There are several organizations that made these sleeves for patients who have lymphedema. You are probably going to need to get two of them. That way, if one needs to be washed, she still has one she can wear.

Sharon: Does she have to wear it every single day? Nighttime too?

Patty: Probably not. But any time it is swollen, she needs to keep it on. She also needs to wear it even when it is not swollen, if she is going to be using her arm to lift or carry anything. Or, in her diabetes exercise class. Wearing the sleeve before using the arm in those types of activities helps reduce the likelihood of her having another episode. But she still has to be very careful. She cannot overdo activities. The sleeve helps but it does not protect against everything.

Sharon: How often is she likely to have this problem?

Patty: No one knows. Once it happens, it can keep happening for little or no reason that we know of. Or it may never happen again. The best way to handle lymphedema is to protect the arm as much as possible and try to prevent it from happening. But it can just happen for no reason at all. Maybe she sleeps on top of it without realizing it and awakens with a swollen arm. There is a lot to still learn about this disease.

Sharon: You call it a disease. Can it cause her serious illness? Does it cause death?

Patty: Almost never. Only in very severe cases. That is another reason why you need to help keep it from happening if possible or to manage it as soon as the symptoms begin. Come to the clinic any time you need help. Or you can call us from home. Does your mom's phone service include the clinic?

Sharon: Yes. The clinic is a local call so that is not a problem. Do we need to tell her cancer doctors about this?

Patty: Definitely. Tell the cancer nurses and any other providers you deal with from the Cancer Center too. That way they can avoid doing any procedures on that arm and accidentally setting off another episode.

Sharon: Thanks. This is all very helpful. I appreciate you making time in your schedule for all of us.

Patty: This problem was a higher priority than the other health problems of the patients waiting to see me this morning. You cannot wait too long to begin to manage the disease, okay?

Sharon: Yes, thank you again.

Patty: Wait, you're not done. I'm going to see my other patients, but I want you to go online and learn more about the different sleeves. Since your mom is 80, Medicare will pay for the sleeves.

Sharon: Ah, but my mom has never applied for Medicare.

Patty: What? Well, go to Martha Jane's office, you know, the social worker, and she will help you fill out the Medicare paperwork. In the meanwhile, when you find the sleeve that seems like it will work best for your mom, let me know and I will authorize it. After your Mom's Medicare comes through, I will give you the bill to submit to Medicare to pay for the sleeves. That way the clinic saves more of its funds for things not covered by Medicare or Medicaid.

Sharon: Thanks. What information do I need before I select the elastic sleeves?

Patty: Go into Peg's office where you mom is having her massage. With Peg's help, use a tape measurer to measure her upper arm on the swollen side and the arm that is not swollen. Peg will also help you measure the length of her arms, the width of her wrists and length of her arms. The websites will also give you the toll free numbers so that you can discuss the different types of sleeves with someone over the phone. Let them know the types of activities your mom still does (like gardening, gathering wood, preparing food for the ceremonies). This will help them work with you to select a sleeve that may be a better match for your mother. Also ask them about their return policy. This is in case the sleeve selected is too uncomfortable for her to wear for any length of time.

Sharon: Okay, I'll get started.

Patty: The list of lymphedema resources that provide sleeves are in my resources notebook (she pulls out the book and opens to the tab on lymphedema). Let Maggie Ann, the receptionist; know if you need any help using the computer. She is very skilled and helps me all the time.

Sharon: Thank you again.

Patty: Oh, one last comment. I know your mom has those lovely silver bracelets that she likes to wear at special events. From now on those have to be worn on her other wrist, okay?

Sharon: Yes, I noticed that item about jewelry and watches on the list you gave us. She never wears a watch, so at least that's not a problem (smiling).

Patty: Okay, again, you did very well getting her into the clinic right away. I'll see you later before your sister and mom leave the clinic. END

Read Marlene's Story 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. END

Read Marlene's Story about Making a Will

Marlene is sitting outside in her favorite chair watching the sun rise. She has finished her morning prayers. Her daughter, Cecelia sits next to her. They are silent together for a long time.

Marlene: Daughter, I enjoy these mornings together with you. Seeing the sunrise. Knowing that the family are pretty much okay. I don't know how many more of these sunrises I will enjoy in this life.

Cecelia: Momma, I think you are going to see a lot more of these sunrises.

Marlene: Maybe. Maybe not. The Creator will let me know (smiles).

Cecelia: Momma, I don't know how to say this in a good way and I want to have you here with us for many more years. I also think that you should have a written will. This does not mean that I think you are going to die soon. I have also made out a will. I do not plan to die soon either.

Marlene: But daughter, those things are for white people. We don't need them here.

Cecelia: I didn't used to think so. But I do now. You remember my friend Lucy who died suddenly last year?

Marlene: Of course I do. She was a good mother to her children.

Cecelia: Well, her family are all fighting with one another. This has been going on since Lucy walked on. She would never have wanted to see her children act this way. It is so sad. They are acting mean to one another.

Marlene: What do you mean? Why would they act mean?

Cecelia: Well, Lucy never had a will written. She had told her children who she wanted to have her jewelry and her grandfather's pipe and her great-grandfather's shield. But nothing was in writing. Lucy just never thought her children would be greedy and mean. But oh, Momma, they have behaved very badly. Her son George stole the shield because he said it was worth a lot of money. He was going to sell it. Henry found out, went over and got George drunk, then stole the shield back. Henry gave it to his son to hide in the hills until George gets his mind back and quits thinking about money. But George didn't get his mind back. He filed a law suit. Against his family for the theft! Can you believe that?

Marlene: But why would he do that. This is his family? I don't understand. Is this because of the alcohol? We never should have let the reservation go "wet". Bad choice. Don't know what the tribal council was thinking of when they passed that. So where is the shield now?

Cecelia: No one knows. Henry's son has disappeared, but everyone knows that Henry knows where he is. But Henry told the son to keep hiding until George gets his mind back.

Marlene: Oh that is sad. Families should not act that way.

Cecelia: Yes, and Lucy never thought that they would. But that's not all. Theda took the pipe!

Marlene: Why would Theda take the pipe? She isn't even a man? What will she do with the pipe?

Cecelia: She just got mad at George and then she got mad at Henry and her nephew for hiding the shield.

Marlene: They are all acting crazy. Lucy was a wise, traditional woman. Why would her children behave so badly.

Cecelia: Well, that is what made me do my own will. I think you should do the same. Even Sancha has made out a will.

Marlene: Sancha? But she is a traditional woman? Why would she need a will?

Cecelia: Because her family from the city also fought about her mother's possessions after the mother walked on.

Marlene: Oh, I don't like to hear these stories.

Cecelia: I don't either. But this is why I think you should also do a will in writing. You can tell me what to write and I will write it and give it to Samuel, the tribal lawyer, so he can make it legal. He can read everything to you to make certain it is what you want done.

Marlene: But daughter, I am poor. I don't have anything.

Cecelia: Yes, Momma, you do. You own this house. You have the paintings and pottery from our ancestors. You have regalia. You have your beautiful beadwork.

Marlene: Oh, I can't think about this now. This is not right.

Cecelia: I know how hard it is. I had the same trouble. But I made myself do it. I asked Lisa to come over and take pictures of all of my things ... even my old Chevy truck. It still runs good. It felt very strange to do this, but I did. I labeled all of the photos of what it was and who it was to go to when I walk on. So many times I just wanted to say, "let my brothers and sisters decide". But I did not. I made certain everyone got something that I think they may like or think of me when they wear it or use it. But it was hard. It took me a long time to do this.

Marlene: When did you do this? I don't remember Lisa coming over to take pictures?

Cecelia: You were taking your afternoon nap. We did it over several days because I kept remembering other things that I needed to decide who they should go to.

Marlene: So you did this in secret? Without me knowing?

Cecelia: That is why I am telling you what I have done now. I did not mean for it to be secret or hidden. But I didn't want to talk with you about writing your own will. I needed to see how hard it would be for me first. Now I know. It was a hard thing to do. Now that I've done it, I am ready to talk with you about it.

Marlene: So talk.

Cecelia: Well, I kept changing my mind about who I wanted to have each thing. Like my concho belt. At first I thought you, but you have your own and rarely wear it any more.

Marlene: No, it is too heavy. So I only wear it for special ceremonies.

Cecelia: Yes. Then I thought Kathy. But Kathy's regalia has the beaded belt. Then I thought about Marylou, Paul's wife; that she may like it. But then I finally decided that Lisa should have it. I don't know why. I just finally decided that Lisa was best.

Marlene: So you gave some things to the wives? That is good. They've been good wives and mothers. But you don't have very much.

Cecelia: No, I don't have much; but I had more than I realized once I started to do this. Like I have the small earrings for a child that I've had since I was a child. Remember Auntie June gave them to me?

Marlene: Oh yes. I didn't know you still had them.

Cecelia: I didn't either. They were down in my old box with my books and things.

Marlene: Oh, this is interesting. What else did you find?

Cecelia: I have old photos of the family and our ancestors.

Cecelia: Well, when I did my will, you can say who is first, second, third and decide that type of stuff. So I said first they went to you. But if you passed on, then they should go to Stacy. If Stacy was no longer alive, then they would go to Paul.

Marlene: Why did you skip Sharon?

Cecelia: Because Sharon has copies of all of the same photos. We did that about ten years ago.

Marlene: Okay, that was good.

Cecelia: So, Momma, will you also do a written will?

Marlene: Why does it have to be written down? Why can't I just tell you who I want to receive things?

Cecelia: Because if it is not written down, it goes through the tribal courts, may even have to go through state courts and nothing oral is legal. It has to be in writing.

Marlene: Hummm. I would rather just tell you.

Cecelia: I know. But you can tell me and I will write it down. I'll read it back to you before I give it to Samuel.

Marlene: Harrumph. How much is this going to cost?

Cecelia: He charged me $100.

Marlene: Where did you get $100?

Cecelia: I sold two of my baskets.

Marlene: Where would I get $100?

Cecelia: We can decide which beadwork or baskets you and I have that we wouldn't mind selling. We can pay for it that way.

Marlene: Okay, let me thing about this for a while. Maybe I should just ask the children to come up and choose for themselves?

Cecelia: I don't think so. They may try to talk you out of doing a written will. Or, they may start fighting now. Or, just be too uncomfortable talking about your belongings while you are still alive.

Marlene: Yes, I think they would be uncomfortable. I would be uncomfortable too. I need to think about this some. END

Read Marlene's Story about Diabetes Dosage

The Family is at home talking to Marlene about her diabetes med dosages.

Family member: Hi, grandma. How are you doing today?

Marlene: I feel kinda tired. And I've had this headache for a couple days. It kind of comes and goes.

Family: It's probably me. I always did give you a headache! Do you think it's your chemo?

Marlene: No, it hasn't felt like this before.

Family: Have you been taking all your medicines?

Marlene: Just like the clinic doctor said.

Family: When did you last check your sugar?

Marlene: Oh, I kinda slacked off the past few days. Just haven't felt up to it. Mostly just resting. Haven't felt like eating much either. I think I've been losing some weight lately.

Family: Well, let's check it. Where's your little checker?

Marlene: It's over on the counter. Strips should be there, too.

(family member helps grandma check sugar)

Family: Grandma, it's 71. What is it usually?

Marlene: Oh, this time of day it would probably be 110 or 120. I don't think it's ever been that low.

Family: It's not supposed to be that low, is it? I think we need to get you to the clinic. We need some help. We need to get some food in you. Maybe the clinic doctor needs to change your diabetes medicine dose. Maybe you're getting too much right now and that's why your sugar is too low. You're not eatin' much. I think they told us this might happen and we need to watch for it. And if this is what's making you feel bad, we can make you feel better. Let's just get over there now. END

John is a 59 year old widower (his wife passed of ovarian cancer 3 years ago). He has 4 adult children, 2 sons and 2 daughters. He lives with his 40 year old son on the reservation. He works full time at the tribal casino as a "money changer". He has private insurance from the tribe and also is eligible for IHS services. He has a 1998 pick-up truck. He was diagnosed with stage 2 breast cancer. The nearest cancer center is 120 miles one way; English is his second language (Native language is his first); He just started a relationship immediately prior to his diagnosis. (quote, "my wife had a terrible time, am I going to have the same pain as she did. I didn't know men could get this disease.")

Names and ages of John's children:
31 year old = Gerald
35 year old = Joseph
38 year old = Marie
40 year old = Sarah

Read John's Story about Pain and a Clinical Trial

John completed his cancer treatment 3 months ago. He continues to have a lot of pain in the area close to where his tumor was removed. He is very embarrassed about having the pain. He feels he should be strong and just ignore the pain. His new girlfriend, Cathy, called the Cancer Center to let them know that he was having pain. The nurse from the Cancer Center asked him about the type of pain he was having and how often it happened. Over the phone she collected information for the "cancer pain "inventory". John's "worst pain" score was a "6". The nurse also decided that the type of pain was "cancer related" rather than some other type of pain. The nurse told him about a pain control clinical trial that he may be eligible to take part in. The trial requires that his "worst pain" score be at least a "6";. The clinical trial does not include any drugs. It is an education study to help patients find better ways to manage their pain.

Question: Do you think educational programs can help John or others successfully learn to control or reduce their cancer-related pain?

Answer: Although educational programs don't work for everyone or for all types of cancer pain, there are many ways to control pain without using drugs.

John's biggest challenge is that he will need to take part in education classes offered by the Cancer Center. He lives 120 miles away. He also works full time and doesn't want to miss any more work.

Question: Do you think John should try to take part in this trial even though he will have to drive 120 miles ONE way for several weeks of education classes at the Cancer Center?

Answer: It would be very difficult for John to stick with the educational program if he has to travel so far to take part in the clinical trial. So, this clinical trial may not be a good choice for him. John may want to ask the clinical trial staff if there is a way to participate in the trial at home. END

Read John's Story about Reducing the Risk for the Side Effect of Mouth Sores

John is about to start his 1st chemo treatment. John's son, Joseph picked him up from the dentist.

Joseph: Hey Dad, what did Dr. Sam have to say (Dr. Sam is their dentist)?

John: Oh he was really sorry to hear about my cancer. He gave me a special soft toothbrush and he talked to me about rinsing my mouth often.

Joseph: What? Like with a breath freshener?

John: No, just with water. Dr. Sam said that some people get infections and mouth sores when they go through chemo. So to help prevent these, he says I need to brush my teeth more often and use a real soft toothbrush. I also need to drink a lot of extra water to help get the poisons out of my body and to rinse my mouth to help get rid of bacteria.

Joseph: Oh, that doesn't sound too bad.

John: No, it is all pretty straight forward.

Joseph: So what is in the bag you're carrying?

John: He gave me some sample toothpastes and some lip gloss.

Joseph: Why did he give you lip gloss?

John: Because some people get real dry, cracked lips while they are on chemo.

Joseph: Oh man. That chemo is just poison.

John: Well, yeah it is. That's the whole point. They are trying to poison the cancer cells without killing me!

John smiles and Joseph laughs

END

Read John's Story about Side Effect of Hairloss

Harold sees John leaving the casino

Harold: [laughing] Hey John, what happened to your hair? Did you join one of those bald gangs?

John: [he starts laughing too] Ah, no, nothing that exciting. [he quits laughing but still smiles]. I've got cancer so my hair was starting to fall out so I just had my son shave it off for me.

Harold: Oh no, man. I didn't know. I'm sorry. I didn't mean to joke about it.

John: Don't worry about it. It's not a problem. It's only hair and it will grow back. Now I know how all those white guys feel who are bald. [He laughs again]. The worse part is my hat is too big. I put it on and it falls over my eyes.

Harold: hey, you could put a fur liner in it so that it fit. Will your hair grow back?

John: Oh yeah. You remember when my wife had cancer that her hair fell out, but it grew back in. So will mine.

Harold: So did you get your cancer from your wife?

John: No. it's a different type of cancer. Besides, cancer isn't catchy.

Harold: Well, your head doesn't look too bad. At least it's nice and round [laughing again].

John: [laughing too] Yeah, that's what my son told me after he shaved it. "Hey Dad. You've got a good looking head."

Harold: Well, at least you're not wearing one of those phony hair pieces.

John: Yeah. But I DID think about it. But I just couldn't deal with it. I mean, what if it fell off while I was dealing cards at work. You know, right in the middle of the table. What do I say, "ante up?" [both men laughing]. END

Read John's Story about Chemotherapy Treatment

John's surgery went well and after a short delay, he started his chemo. He is in his 3rd week of chemo. John's son comes into his bedroom to check on him because he hasn't been doing very well with the chemo.

Gerald: Hey Dad, how are you doing?

John: Oh, boy. Not so good.

Gerald: Are you still throwing up a lot?

John: Yeah. I can't seem to keep anything down.

Gerald: What about the diarrhea?

John: Yeah, bad.

Gerald: Let's see if some of the Pedialyte helps. The nurse said we've got to get some liquids into you and that the Pedialyte has other nutrients that you're losing with the vomiting and diarrhea.

John: I just can't seem to stand the taste. Everything tastes metallic. I can't even think about drinking it.

Gerald: Well, I've got some 7-Up and the nurse said to try taking a small sip of the 7-Up and then a small sip of the Pedialyte . Okay?

[Gerald gently helps his father sit up in bed a little. He places the straw to the 7-Up to his dad's mouth. John takes one sip of each then signals that that is enough]

John: No more for right now. I'll try again a little later, son.

Gerald: That's okay, Dad. The nurse said to take it real slow - maybe once every thirty minutes to see how well you can keep it down. If you keep getting sick, we've got to take you back to the hospital. They said they'd put in an IV so that you'll get some nutrients and liquids that way if you're unable to keep anything down.

John: Oh boy, I hate to go back there. It just brings back too many memories of your mom and what she went through. Maybe I should just forget the chemo and let myself die.

Gerald: Now Dad. You're just feeling bad because of the chemo. The doctors all say you're going to be fine. Your cancer is only stage 2. That's pretty good Dad. You've just got to get through this. You want to see your grandchildren grow up, right?

John: Yeah, it is thoughts of them that make me want to fight it. So, you really think I feel this bad just from the chemo and it's not the cancer getting worse.

Gerald: Yes Dad. I think this is just a bad reaction to the chemo. I'm sorry Dad. I know you feel lousy right now. But it's going to get better. END

Read John's Story about Lymphedema Exercise

John and his son, Gerald are at the YMCA that is about 5 miles outside of the reservation.

Gerald: Okay Dad, now remember what the therapist told you. You've got to go slow and easy today and do the exercises he told you to do. Nothing more.

John: Yeah, I know. But I've got to get this swelling down in my arm so that I can deal cards at the casino next week. You know I've only had that promotion from being a money changer to dealer for a few months and I don't want to lose my job.

Gerald: Yeah, I know. But the therapist said you got in pretty fast for the swelling - what'd he call it?

John: "Lymphedema"

Gerald: Yeah, that's it. I keep forgetting how to say it. Does it hurt or anything now?

John: No. I'm wearing the sleeve that the therapist help fit for me. (Smiling) He had to get me a really big one because my arms are so big. Most of the sleeves are for women and most don't need one this large.

Gerald: Well, it's good you've always been active and strong - well, okay, other than when the chemo made you sick. With your long sleeve casino workout suit, you can't even tell there is anything wrong with your arm.

John: Well, thank the Creator for that. It still feels pretty heavy and just kind of awkward to move. But it feels better since the therapist worked on me the last few days. Boy, I always thought those guys were kind of strange. You know - like not really for real? But he was really good and really knew what he was doing. I think I could have been in real trouble if the casino hadn't approved money for a physical therapist to be on staff in the clinic.

Gerald: Yeah, I think he's a pretty good guy too. He wasn't even weird about you having breast cancer.

John: Yeah, that would have been embarrassing. But he was good.

Gerald: Okay, now did you bring the list of exercises he circled on that sheet for you to do? You had it lying in the bottom of your locker while we were changing.

John: I've got it. I just folded it up and put it into my pocket.

Gerald: Okay, well, why don't I do the exercises with you then I'll go over and do some of my normal workout when you get to the part where he wants you to do the relaxation exercises at the end, okay?

John: Oh son, you can go do your regular workout. I'll be fine.

Gerald: I know you'll be fine, but I think until you get into the routine that it'd be better if we both did them. After a few days of us doing them together, you'll probably start to get into this new routine.

John: Okay, thanks son. Seems like you ought to go back into the locker room then and wrap your arm too before we start (laughing).

Gerald: Ah, thanks dad, but I don't think we have to go that far (laughing).

John pulls out the therapist's lists of exercises so that they can both read them and do them correctly. END

Read John's Story about Spirituality and How we talk about our Illness

John was having supper with his sister, Sunshine. John had just returned from his Doctor appointment and their conversation went like this:

Sunshine: Hey brother. How did your doctor appointment go?

John: She told me my cancer has stabilized. My cancer really has not been bothering me that bad this week.

Sunshine: Is the cancer really yours? It's not "yours" brother. It is something you are dealing with. I don't know if you know this, but every time you talk about the cancer you are dealing with, you say it's ”yours“.

John: I do?

Sunshine: Yes you do. I hope you don't mind if I share some something I learned from our grandma.

John: Sure, I am open to anything you have to share.

Sunshine: She said I had to watch how I talked to myself. She said the more times I said "my diabetes", it WAS mine. I needed to watch what I told myself, because if I kept telling myself it is "my diabetes" it surely is. That I would never heal.

John: Yes, I see this makes sense. Our bodies do listen to what we tell it. I know this. So what do you suggest?

Sunshine: Grandma said to talk about it as the "diabetes I am dealing with". Not to "own it" or personalize it.

John: I see. It is NOT mine. It is just something I am dealing with. I'm going to work on that. Thanks for sharing Sis. END

Read John's Story about Mouth Sores

The Family is at home talking to John about his mouth sores.

Family member: Dad, you look like you hurt.

Patient: My mouth is so sore. The doctor said this might happen. I'm hungry, but it hurts to eat. The food just burns.

Family: do you have any medicine for it?

Patient: Well, the chemo nurse said to put Vaseline on it, but that's not helping. My lips stick together when I'm sleeping. Then it really hurts to open my mouth. I put extra Vaseline on when I go to bed, but my lips still stick together. I try to soak them open with a damp washcloth.

Family: Did you tell the doctor?

Patient: No, I hate to bother them.

Family: Dad! They told you to call anytime, if you were having problems or if you just had questions. This is a real problem. You hurt, plus you can't eat and you need to eat to stay strong.

Patient: Well, I don't want to call them. I wouldn't know what to say, but if you want to call them, go right ahead.

(family member calls the cancer doctor's office)

Family: Dad, they have some medicine for this! It's called 'magic mouthwash.' And they've called the prescription in to the clinic. It will help with the soreness. Plus, they said to be sure to call back, if it doesn't help you.

Read John's Story about Too Many Visitors, Diabetes and Treatment

John talking to his daughter, Marie about too many visitors.

Marie: Hi, Dad. How's it going?

John: Oh, Marie, I'm just exhausted.

Marie: Why are you exhausted? Is it your treatments?

John: Well, I don't feel too whippy anyway, but yesterday there must have been 15 people here.

Marie: 15 people?! What was going on?

John: Well, it was very nice. They put me on the prayer list at church and put a notice in the newsletter, so everyone just wanted me to know they were thinking of me. They wanted to know if I needed anything. Look at all that food over there!

Marie: Mmm, looks like Rosie's famous corn pudding. Good thing you're diabetic. I'll have to eat those for you.

John: I'm so lucky that you always have my best interests at heart. Please, do take them home. But I'm exhausted. I don't know what to do. They're so nice and they mean well. But I just can't handle that. The phone is ringing off the hook. I sure wish your mom was still with us. She'd know how to handle this, wouldn't she?

Marie: I have a couple ideas. First, I think I'll make you a sign for the door. It will just say: "Resting. No visitors right now." And I'll stop by the church and ask them to put a note in the newsletter asking friends not to call, but to send a card instead. How does that sound?

John: You don't think it's rude or sounds ungrateful?

Marie: Your real friends will understand and will want to do what's best for you. They know that while you're undergoing treatment, you need all the rest you can get. Plus, by limiting your visitors, maybe you won't be getting all their colds and stuff.

When you're having a good day or feeling better, you can take the sign down.

John: That's a big relief. Tell the church folks thanks for their help. END

Dawn is a 55 year old divorcee with 3 adult children. She lives on the reservation with her mother who has severe diabetes. Dawn is 30 pounds overweight and also has diabetes. She received her AA degree from college and has a good career as a tribal councilwoman. She has private insurance through the tribe and is also eligible for IHS services. She has both local and long distance phone service. She is fluent in both her Native language and English. She is a very articulate speaker. She was diagnosed with stage 2 breast cancer. She lives 125 miles from cancer center and has her own vehicle (2000 Ford truck).

Names and ages of her children:
30 year old = Harriet
31 year old = Amanda
34 year old = Susan

Read Dawn's Story about Affirmations

Crystal: I overheard a person in the restaurant talk about affirmations. Do you know what affirmations are?

Dawn: Yes, I use affirmations all the time. They are little sayings that encourage me and help me tell myself something more positive than what I was telling myself before. I call them words of wisdom.

Crystal: Like what? Give me an example.

Dawn: Sure, I use to tell myself that I was hopeless. That I could not heal myself, that only the doctors could do my healing. With this attitude they WERE the only ones who could help me.

Crystal: Uh huh

Dawn: Then I found in little sentence in a magazine I was reading that said "You have the power within to heal your self". I thought about it. (pause) This made a lot of sense to me. So I wrote it down and told myself over and over again. It was like my prayer. Then I wrote it on real bright paper and put it everywhere I went, like in my car, on the bathroom mirror, on the refrigerator, every where I looked. When I saw it, it reminded me to tell myself this over and over.

Crystal: Oh, I see, so when you tell your self over and over it becomes a part of you and what you believe!

Dawn: That's right! Now I do things differently. I not only work with the doctors but I help too by using my own special healing power and what I know is right for me. I am doing MUCH better now. I truly DO have the power within to heal myself.

Crystal: I like that idea. I think I'm going to try it.

To the Reader: Which is an example of a personal message that you think you'd like to use?

I am an important member of my family
I am a well woman and teacher to my children
Just do it!
I accept myself. I like who I am.
Never give up!
Other

END

Read About Dawn's Story about Chemotherapy Treatment

Dawn is in her second week of chemo. She is at the tribal council building a few hours before the meeting begins. She is making photocopies for the meeting when she suddenly feels sick. Henry, the Tribal Chairman walks in and sees her bent over and hanging onto the photocopy machine. He knows about her diabetes but not about her cancer.

Henry: Oh no. I'll bet you forgot to eat today. Do you want me to get you some juice?

Dawn [gasping in discomfort]: No, thank you. It's not that. Just give a minute.

Henry: Let me help you sit down.

Dawn: Not yet. Don't move me yet. Let me get balanced.

A few minutes pass and she begins to breathe easier. Henry gently helps her into a chair.

Henry: Are you okay? Do you want me to call the clinic?

Dawn: I think I am okay. I've been a little sick and I think I'm having a reaction to the medicine.

Henry: Is this a woman-thing? Should I get my wife to help you?

Dawn: No no no no. It is not a woman-thing. I was feeling so good I was hoping I didn't have to tell anyone. But I guess I'd better now. Come on, sit down.

Henry: Do you want me to get you some juice or anything? You look all sweaty.

Dawn: I'll be okay. I was diagnosed with cancer about 2 months ago and I am in my second week of chemo. I should be okay. I'm a pretty early stage of the cancer. The nurse told me that I could suddenly have side effects from the chemo and I guess this is it. I just had like a hot flash and suddenly felt really weak and then a headache. Kind of like BOOM, BOOM, BOOM is the way it hit me. I feel a little better but not great. It just kind of caught me by surprise.

Henry: I'm really sorry about the cancer. But I'm glad to hear that you're going to be okay. Let's have the CHR drive you home. I'll finish making the copies for the meeting. I think you should just go home and rest and miss the meeting tonight. What do you think?

Dawn: Yeah, I think I may be better if I go home. If I did this in the middle of the meeting that ol' biddy Marge would have a hay day. She'd love it.

Henry: Is there anything you'd like me to share with the other council members?

Dawn: No, I'd rather tell them myself, but when I'm feeling stronger. I can't afford to give Marge any slack. She'll be demanding that I resign and tell everyone I'm dying. But I'm not. I'm going to be okay.

Henry: [smiling] Yeah, I understand. Okay, I'll just say that you had to take care of something and won't be here tonight. If anything real important comes up that I know you'd want a say in, I'll delay the vote. Now let's get the CHR to take you home. I'll help you out to the van.

Dawn: Thanks, I appreciate that. Well, one good thing. I'm losing some weight [smiles]. Okay, now how are you going to get me out of Tribal Headquarters without anyone seeing you help me? END

Read Dawn's Story about Fatigue following Chemotherapy

Dawn finished her chemotherapy last month. She was able to work most of the time even though she was very tired. She went in as many days as she could and always did as much of her work as she could even if she had to take a nap and finish it later in the day or on the weekend. She was allowed to work half days if she needed to and to take days off if she wasn't well. Now she is back full time and there are 3 meetings set for this week at the tribal council. Harry, the Tribal Chairman, sees her at her desk and sits down to talk.

Henry: Dawn, I'm so glad you are done with your treatment and we can really get back to work. We all know it was hard to get chemo, but everything will be fine now, right?

Dawn: I'm glad I'm done, too. But I'm really tired and it doesn't seem to be any better. My nurse told me it would last a while, but I thought the tiredness would be gone in a month.

Henry: I was counting on your being able to do everything now that you're done. We have 3 meetings this week and I need you to make copies, plan for the food and set up the meetings.

Dawn: I'll be okay, I know you all were so good to me while I was sick, and I know you are counting on me. I can do it.

Henry leaves and Dawn puts her head on her desk to rest a few minute.

Dawn: [thinking to herself] What am I going to do? They have been so good to me and now I need to be able to work. But I am so tired that I don't feel like doing anything but sleeping. I have to figure it out. I need this job!

Henry comes back in and sees Dawn with her head down.

Henry: Are you okay? Do you need to go home? I know I need your help, and I thought you would be fine by now. But we'll manage!

Dawn: No, I don't need to go home. The nurse told me there were things to do to make it easier. I will have to try them. The really bad thing is that I can't seem to remember things very well.

Henry: What did the nurse say to do?

Dawn: Well, she told me to make sure I get rest at night and take no more than a 30 minute nap during the day. She said to make my room quiet and dark and to try to sleep. She said if I can't sleep I should get up and do something until I feel weak and then try again. She also said to eat well and get some exercise every day. The most important thing is that it will get better, but it may take a year or so to go away.

Henry: Oh no, not a year! That's a long time! We'll figure it out. Maybe you can sit by the copy machine to make the copies and we can get some of the others to get the room ready and order the food. We're all so glad you're going to be okay. Rest a bit.

Dawn: Thanks! I'll make sure I save my energy for doing the work I really need to do. END

Read Dawn's Story about Side Effect of Mouth Sores

Dawn just completed her 4th chemo treatment. She started having mouth sores a week ago. She is sitting in the Tribal Council Meeting room alone when her daughter, Amanda comes in.

Amanda (asking gently): Mom, what are you doing? You look like you are just staring into space?

Dawn: Ah, hello Amanda. No, I am fine. I am just working on some visual imagery.

Amanda: Okay. Is everything okay? You seem a little weak still from the chemo yesterday. Can I get you anything? How about some orange juice?

Dawn: Oh, no, I am fine, really. I just have some pain because of the sores in my mouth. I forgot and had some orange juice. OOOOhhhh. My mouth just hurt so badly. It is still stinging. No more orange juice until these sores heal! So I am using my mind to think of something other than the pain (chuckling).

Amanda: Oh Mom, I'm so sorry.

Dawn: Oh, it is okay. I am just angry at myself for being so silly. I know better than to put something acidic in my mouth right now. I was just thinking that the juice would be okay for my diabetes and maintaining the weight I've been losing on the chemo. I guess the sores are worse than I realized (sigh).

Amanda: How can I help, Mom?

Dawn: Oh, you can sit here with me for a few minutes and hold my hand.

They sit quietly together for a few minutes.

Dawn: Oh, that is better. Now, would you pray with me for the Creator to help me heal and take better care of myself?

Amanda bows her head and says a prayer in their Native language while still holding her mother's hand.

Amanda: So it sounds like you didn't eat any lunch because the sores in your mouth hurt too badly?

Dawn: Yes, I didn't eat. I don't think I am ready to eat anything yet.

Amanda: But Mom, you have to remember your diabetes and not let your blood sugar get low.

Dawn: Yes, you're right. How about some cottage cheese? That should be okay for me to eat … nice and soft … and good protein for me.

Amanda: Great, I will go get you some. You just rest here, okay, Mom?

END

Read Dawn's Story about the continued Side Effect of Mouth Sores

Dawn completed her 5th chemo treatment and is having trouble with sores in her mouth that are causing her pain. She is having dinner with her mother and her daughters, Crystal, Amanda and Susan in her home.

Amanda (asking gently): Mom, what are you doing? You look like you are just staring into space?

Dawn: thank you Crystal for bringing the meal over. I just didn't feel like driving anywhere. I don't feel like talking much, okay? It is just hard because my mouth hurts.

Grandma (Dawn's mother): I thank you too. I was very tired today and your mom was gone most of the day.

Amanda: Yes, I'm sorry you were alone today, but Mom told us that she had to take care of a few things for the Tribe on her way home from the clinic.

Crystal (looking at Dawn): Well, I am always surprised that you are still working full-time for the tribe while you are going through the chemo.

Grandma: I told her she should tell the Tribal leaders what is going on and she should stay home.

Dawn: No Mom. Thank you, but I like to stay busy. It helps keep my mind off the discomfort.

Crystal: Well Amanda and Susan helped me pick up food for tonight. We went online and looked at the foods that may be easier for you to eat and swallow.

Dawn smiles at them but doesn't try to speak. Crystal sets out a pitcher of water, mashed potatoes, gravy, pureed broccoli soup, scrambled eggs with cheese, applesauce, Jell-O and pudding. Dawn smiles at the food and pours herself a glass of water. She leans her head back to help swallow the liquid. Susan dishes out food for Dawn and her grandmother.

Susan: Can I help you, Mom? Dawn shakes her head, … no … and smiles at Susan.

Grandma: Oh, it all looks good.

They all eat some. Dawn leans her head back to help her swallow after chewing the foods carefully. She takes a sip of water in between each bite of food.

Amanda: How are the sores in your mouth? Did the medicine the dentist give you help any? Don't try to talk, just nod or shake your head, okay Mom?

Dawn nods her head and smiles.

Crystal: I am making dinner tomorrow night. We are going to have pasta with a cream sauce. Do you think that will be okay for your mouth?

Dawn nods her head and smiles broadly. The family finishes their meal.

Crystal, Amanda and Susan come out from the kitchen after cleaning up and all three are smiling and holding their hands behind their back. Dawn tilts her head at them curiously. They bring their hands forward and each is holding … no sugar added … foods: popsicles, a vanilla shake, pudding and custard.
Crystal: The website also said that it was good for you to have any of these. They do not have sugar added so shouldn't be bad for your diabetes. Which would you like? Or do you want ALL of them?

They all start laughing as Dawn reaches for the shake.

END

Read Dawn's Story of Cognitive Dysfunction (Chemo brain) 6 months after completing Chemotherapy

Dawn has now been done with her chemo for 6 months. She is no longer taking naps, is getting exercise every day and eating well. But she still has trouble thinking clearly and can't read a book or watch a complete TV show without losing track of the plot. Her daughter Carolyn has come to visit and is talking about the new fall TV shows.

Carolyn: Oh, Mom! I can't wait to see all the new shows on TV. They sound so interesting! There is a murder mystery, a hospital show, a couple of comedies and several reality shows. I like to rest after work and just watch TV. All the new shows should help me relax!

Dawn: I wish I could watch the shows, but I just can't follow them. I am so forgetful that after the commercial I can't remember what I just saw.

Carolyn: Why can't you concentrate?

Dawn: It has something to do with my chemo. It happens to lots of people. The nurses call it "chemo brain." My brain doesn't work as well as it did. It is supposed to get better, just like the fatigue is getting better, but it's taking a long time.

Carolyn: Is there anything you can do?

Dawn: Well, the nurse told me to not get stressed, but how do I do that with my job? We have so many things going on at the Tribal Council right now that I feel stressed every day!

Carolyn: Is there anything else to try? It's hard not to be stressed when you can't remember things you need to and can't concentrate.

Dawn: Well, she did tell me to get outside everyday, so I have been walking at lunch. And I have been sleeping better at night, so I ma not so tired. That seems to help, too. I want to try some herbs, but I need to talk with my doctor first.

Carolyn: Well, I hope that helps! In the meantime, I'll tell you the plots of the new shows and we can watch them together. That will be fun and I can help you remember!

Read Dawn's Story about Communication

Dawn is talking with Margaret, another Councilwoman before the Council meeting begins.

Dawn: I need to call my girls and have them come out and help me with my mother.

Margaret: Oh, that's right; you're going to be gone for a while.

Dawn: Yes, I start my treatment soon. Boy did I have a hard time with the doctor.

Margaret: Oh no. I didn't hear anything about that. What happened?

Dawn: Well, I had heard about this new way to do treatment for my type of breast cancer. I asked him about it and he just pretended he didn't even hear me.

Margaret: [giggling] Oh, I can see where this is going already.

Dawn: Oh yeah. He looks at me and just sees some Indian woman. He must think we're all stupid. Well, he won't make that mistake again.

Margaret: [laughing] What happened?

Dawn: Well, after he pretended to know hear me, I stepped out in the hall and asked the nurse to come in. She asked if there was some problem. I said very quietly to her, well, I think Dr. Clark forgot his hearing aid. So maybe you can go down to his office and bring it back to him.

Margaret: [laughing harder] What did he do? Did he hear you?

Dawn: [smiling] Of course he heard me. He was rather annoyed but he finally looked up from his precious paperwork and looked me in the eye. I looked right back at him. I said, "I feel very insulted when you pretend to not hear me and ignore my questions. I want you to start answering me, and honestly because I have read a lot about my type of cancer and know I can be cured".

Margaret: Oh, that was good. What did he do?

Dawn: He said he had to go check on something and left me alone in the office. So I looked at my watch and timed him. He didn't come back for 15 minutes.

Margaret: uh oh.

Dawn: So, I asked him what he had found out. He looked at me dumbly and asked me what I was talking about. I said, well since you said you had to go check on something and that was in the middle of my appointment with him, I figured it must have had something to do with my or my treatment. He says, "no" he had to take care of something personal. I said, "what? Are you well? Is your family okay? If you're worried about you or your family maybe you shouldn't be at work today?" He says, "No, nothing like that. Let's get back to you." And I say, "but if you're distracted and not able to answer my questions maybe I should see another provider who sees more cancer patients?" He gets all uncomfortable then and says I have private insurance and I change doctors any time I want. I said, "Fine. I'll go to the front desk and share with them my need to have a doctor who respects me enough to look at me and answer my questions." And I got up...didn't even pick up my clothes...I walk down the hallway out into reception wearing that stupid gown that opens up in the back over my jeans (well, I was holding it closed so no one would see my bare back). I tell the receptionist that I'm in room 4 and need a provider who is better qualified to work with a cancer patient. She gets all uncomfortable and asks what happened. I told her and also asked for a complaint form. I tell her that I'm not angry with her. But that I will remain in room 4 until another doctor comes in to help me. I am not going to take this type of incompetence any longer. I have private insurance now. I deserve better care than that.

Margaret: Yeah. I agree. I'm tired of not getting the same care as the other patients. I have private insurance now too. So what happened next?

Dawn: Well, I ended up talking with several others who tried to excuse his behavior and one of them had the nerve to say, "He's not used to working with Indians". I said, well, since you are the closest clinic to our tribe and we now have private health insurance, he'd better learn and learn quickly. so, are you saying he is prejudiced about us?" They jumped all over that - probably thinking I'd file a lawsuit. Man. How stupid. Anyway, they finally got one of the providers who said she'd be happy to help me. And she did.

Margaret: Really. That's good. What did she do?

Dawn: Well, I told her about the website with referral information and the Walking Forward Program up at Rapid City Regional Hospital. She didn't know anything about it. So while I was with her, we got online and I showed her the information. She called up the Hospital and got some information from them. In no less than 1 hour I had an appointment for my surgery and the type of radiation they do up there.

Margaret: When does all of this happen?

Dawn: Well, I already had the lumpectomy ... where they take out the tumor and some tissue around it. I go to Rapid City in 10 more days to start the new way they are doing radiation. It is called "brachytherapy".

Margaret: How long will you be gone? Who is going with you?

Dawn: I'll only be there for 8 days. They helped me get into an inexpensive hotel and my oldest daughter, Susan, is going to drive up with me and stay in the hotel with me.

Margaret: You won't be in the hospital?

Dawn: No. It is a clinical trial study and I go in to the hospital each morning and evening and in the middle of the day Susan and I can go to a show or shop or anything.

Margaret: How did you find out about this?

Dawn: Well, when I found out I had cancer, I went on the web. I found the "Native American Cancer Education for Survivors" (NACES) website. There was information about how to ask questions and information about clinical trials. I heard that one of the reasons former Principal Chief Wilma Mankiller was doing so well was because she had done a couple of different clinical trials. So I read more about the treatment and decided that was what I wanted to try.

Margaret: So the insurance is paying for it?

Dawn: Yes. But first I had to ask a lot of questions. But this new woman provider, Dr. Smith, is real nice and listened to me. She wasn't afraid to say she didn't know much about the clinical trial and she also read up on it. But I had to ask her some questions before I chose that trial to go on.

Margaret: What types of questions?

Dawn: Well, that NACES website has a section on how to ask questions. The questions are called "I-Messages" and aren't at all the way we talk. But they are phrased in ways that non-Native providers seem to understand. So I practiced with the website on how to make these types of questions. I have it written down in my purse. [she opens her purse and then she pulls out a piece of paper. She reads from the paper]

I want to know what types of clinical trials are available here for my type of cancer because I want to get the best care to cure this disease.

I want to receive the best care available when I go in to have my cancer treatment and I need care that won't keep me away from my family for a long time because they will worry too much about me.

Anyway, I have a whole list of questions from the website - some are just good questions and some using that "I-message" phrasing. But it worked.

Margaret: This sounds really good. Do you need me to do anything to help you while you are gone?

Dawn: Thank you for the offer. Right now I think I am doing pretty well. My girls are all helping too. It would be helpful if you'd take an extra copy of all of the Council meeting materials for me to read when I get back though.

Margaret: Sure. I'd be happy to do that. I can bring them to your home once you're back. Let me know how you're doing while you're up there too, okay?

Dawn: Yes, I'll call you and tell you how it is going. I guess the first day is the longest and the one that has some discomfort. So I probably won't call you then. END

Read Dawn's Story about Surgery

Mother: Well, welcome home. How did it go?

Dawn: All I got to say is that I'm glad I'm on the Council! Boy - even with my status as a tribal councilmember, you would not believe the paperwork and hassle I've got to go through to get treatment for this cancer.

Mother: But they're going to refer you to the surgeon?

Dawn: Oh yeah, finally. I had to go get the clinic nurse to come back to the CHS officer and remind her than we are compacted and she can be fired at any time. Man, it was really silly. And I feel bad cause there is this big pile of other tribal applicants for referral. We go no money left other than for emergencies. It is still 5 months to the new fiscal year. But I told her I was an emergency and she had to move me up so that I can get this taken care of.

Mother: Good for you. As hard as you work on the Council, there needs to be some reward. So where are they going to send you for the surgery?

Dawn: I've got to go all the way to Los Angeles, California.

Mother: What do you mean? Why do you have to go so far away? We don't have any family in L.A.? Who is going to watch out for you while you're gone? They're just a bunch of urbans, they don't know what you need. Who's gonna take care of me while you're gone? How long will you be gone?

Dawn: This Cancer Center in L.A. is who the tribe contracts with for cancer care, so that's where I got to go. They say that I should pack for at least 2 weeks. They say the surgery won't take that long, but they have to do some more tests before the surgery, and figure out my chemo for after the surgery. They say I'll probably be on my way home in 5 days, but they just want me to be prepared. Also, if I decide to have breast reconstruction, I'll have to stay longer.

Mother: Well, is the tribe paying for your hospital bill?

Dawn: Yes, mom, completely.

Mother: What about for the new boobs?

Dawn: No, but I put in the paperwork to the California Treatment Act. That may cover the costs of the reconstruction for new boobs. I don't even know for certain that I'll do it. It's not like I'm trying to be a movie star - all plastic.

Mother: No, but you're only 55 and you got no man. You've got better choices if you've got all of your body parts than without them.

Dawn: I'm not so sure about that. I want a man who would love me - not my breasts. I figure if he loves me, breasts shouldn't be that important. I'm too old to have any more kids. So, I don't know. I worry about how safe they are. But the doctor say they are saline - just filled with salt water.

Mother: (smiling) Humm- I don't know. You could make this kind of fun. Wasn't one of those surgeries where they take your tummy and make 'em into boobs? You'd be looking pretty good. Wonder if this will lower your blood sugar too? You know, cutting off parts is losing weight isn't it?

Dawn: Well, I'm not so sure about that. I'll have to ask the diabetes doctor about that (giggling).

Mother: What about your drugs after you come home. Will the tribe pay for those?

Dawn: Well, I don't know yet. A few of them that they told me about are real expensive and the tribe doesn't carry any of those here.

Mother: You know how expensive some of those drugs are - especially cancer drugs. I think you may need to call that Native American Cancer Support Network, NACR.

Dawn: Yeah, I've got their number. I figured I should wait to find out what types of drugs I have to have first. It sounds pretty important for me to have these drugs. I will also have to go back and forth for my chemo later on. And I guess if I do decide to get the boobs, that I'll need some drugs for that too. You know for infection and stuff.

Mother: So, what do you have to do before the surgery?

Dawn: Not much. I'm going to church to talk to the minister tonight and then I'm going to the basket weavers group and ask them to pray for me.

Mother: But you're going to be all alone when you're in L.A. for the surgery?

Dawn: Yeah, I know. I think the NACR's Survivors' Network has some people in L.A. who can also help me.

Mother: that's good. Just to have someone nice to visit with you. Pray with you. Maybe do a little basket weaving with you.

Dawn: Well, there are a lot of Indian basket weavers who live there or close by, so I may ask one of them to come visit me.

Mother: Are you scared?

Dawn: A little, but really, I'm just kind of anxious to get it over with. You know, I just want to deal with it; get it over with. END

Read Dawn's Story about Diabetes and Cancer

The Family is at home talking to the Dawn about her loss of appetite.

Dawn: You know, I just don't feel like eating. I just can't.

Family: What sounds good? Let me make something for you.

Dawn: Well, the problem is that nothing tastes good. I made myself some bean soup. It didn't even taste like beans.

Family: Think of your favorite food. Let me make it for you. You love boiled potatoes.

Dawn: I tried that. It didn't taste like potatoes either. Worse than that, it was like having a mouth full of dry cotton. I could hardly swallow it.

Family: it sounds like we need to find some things that either taste good or at least will go down. Did you have your coffee this morning?

Dawn: Doesn't taste good any more. I don't even like to smell it.

Family: Remember when Doris was doing chemo and she didn't feel like eating? They bought some stuff for her at the store that's like a liquid meal in a can and that worked really well.

Dawn: Yeah, I kinda remember that. It seems like there were two kinds, one was called Boost and the other one was like insurance or something.

Family: Yes, Ensure it's called. They come in different flavors. And some people think they taste even better if they're cold.

Dawn: one problem: I remember that it gave her diarrhea, because it has milk in it and she can't drink milk.

Family: that's right. I remember that, too. But you know, her chemo nurse told her to get these pills that take care of the milk sugar. She got those pills and took one before she drank her Boost and she did just fine. It really helped her get some food in.

Dawn: Okay, let's give it a try.

JoAnne is a 40 year old, very traditional, modest woman. She was never married and has no children. She lives alone. She has a high school education and lives on the reservation. She has a healthy traditional lifestyle and no major health problems. She provides child care services to her neighbors out of her home. She also is a skilled beader and she obtains some income by selling her beadwork during community social events and occasionally at a booth next to the highway. She was diagnosed stage 2 breast cancer. Her health care is through Indian Health Services, but she also has "catastrophic" health insurance. There is no water or power to home; She does not have a phone. She does have an old truck (1980) for transportation. She lives 70 miles from cancer center.

Read Joanne's Story about Hairloss

Rosemarie sees Joanne at the store. Joanne takes care of Rosemarie's children. Joanne is starting her chemo this week and asked another neighbor to help out with the childcare in case she has trouble with the chemo. Rosemarie knows the chemo starts this week.

Rosemarie: Hello Joanne. How are you feeling?

Joanne: I am feeling good. I prayed with Walter (the traditional Indian healer) and I am ready for my treatments.

Rosemarie: That's good to go into treatment feeling strong. I think it is good that Gloria is going to help you this week with the children, so you can take it a little easy.

Joanne: Yes, she enjoys the children so much and she likes to help out when she can.

Rosemarie: Is there anything I can do to help?

Joanne: No, I think I am fine. I just hope I don't lose my hair [she chuckles a little embarrassed].

Rosemarie: Well, we all know how close you are to the Creator. Maybe He won't let your hair fall out because you're such a traditional woman?

Joanne: I don't know. I hope so.

Rosemarie: Well, let me know if you need anything. I will pray for you and your healing.

Joanne: Thank you and I will if I need anything.

3 WEEKS LATER

Rosemarie comes to Joanne's house with some food. She knocks on her door. Gloria, the neighbor who helps out with the children answers the door.

Gloria: Hello Rosemarie, how nice to see you. Please come in.

Rosemarie: Hello Gloria, I came early to pick up the children because I got home from work early. I haven't seen Joanne for several days. I brought her some food. How is she feeling?

Gloria: Oh, she is pretty tired but she is still working with the children everyday.

Rosemarie: Oh good. I was worried about her. I've been praying for her. My children told me she started to wear a scarf a few days ago.

Gloria: Thank you for the prayers. I will tell her you're here. She is in the back yard with the children. Why don't you wait here and I'll go get her. She may want to talk to you alone.

Rosemarie: Okay, I'll just put this in the ice box. She makes some fresh coffee and washes a few of the dishes from the children's lunch while she waits for Joanne.

Gloria leaves and a few minutes later Joanne comes in walking a little slower than normal. She has lost about 8 pounds. She is wearing a scarf that covers her head completely.

Joanne: Hello Rosemarie. Oh, thank you with the dishes. Gloria says you brought me something to eat again. Thank you. That was very nice of you to do. I've enjoyed the meals you've brought me. I just haven't been able to eat very much yet and haven't bothered with cooking yet.

Rosemarie pours some coffee into two cups and brings them to the kitchen table. Both women sit down.

Joanne: thank you for the coffee. You've been so helpful. I really appreciate it.

Rosemarie: Oh, this is easy for me to do and it is nice to be able to help YOU out for a change. So, how are you really feeling?

Joanne: Well, I was doing pretty good, just a few stomach problems. Then all of a sudden last Tuesday, I was in the shower and a whole bunch of my hair just fell out. It was all around my feet. It was so scary. [She starts to cry]. It felt so awful to be stepping on my hair. It looked like an animal died in my shower. It was horrible. I reached up and felt my head and then a whole bunch more hair was in my hand. I just lost it. I just got so scared.

Rosemarie gets up and gently holds Joanne.

Rosemarie: Oh, that is awful. I would have been scared too.

Joanne: I just didn't think this would happen to me. I know it happens to other people, but I just thought because I pray and am so traditional, that the Creator would let me keep my hair. Now I wonder if He is mad at me or if I have done something wrong.

Rosemarie: Well, you know other cancer patients who are good people and they lost their hair too. I don't think they were bad. Have you talked to Walter [the traditional healer].

Joanne: Yes, I asked Gloria to go get him for me when she came over to help with the children. I asked the children to play outside and just sort of hid inside. I put this scarf on. I felt dirty and ashamed because I lost my hair.

Rosemarie: What did Walter say?

Joanne: He said it was okay. He's seen other traditional people going through cancer lose their hair too. Some do and some don't. Then we prayed together. I felt better. Calmer. But I still feel ashamed.

Rosemarie: Well, how bad is it?

Joanne: Here, look [she loosens the scarf to show her head. There are a few clumps of long hair, but she is mostly bald. She begins crying again].

Rosemarie: Hummmm. I think it would look better if you cut off the rest of it. You can save it for your pillow. If you want, I'll cut it for you.

Joanne: Oh, I just haven't been able to bear cutting it. I feel so lost, like the Creator has pushed me away.

Rosemarie: Oh Joanne, the Creator would never do that. This is just from the treatment. I know Margarite lost her hair when she had cancer, but she got it back. You will too.

Joanne: yes, please cut it for me. I just don't want to do it myself.

They go into the other room and Rosemarie cuts off the few remaining long strands of hair. Joanne replaces the scarf over her head.

Joanne: Thank you. I'll try to get used to it. Maybe I should have Walter come over and bless my head (she giggles a little shyly).

Rosemarie: (laughing softly) That's a good idea. Do you want me to go get him for you later?

Joanne: Yeah, I think I need to pray with him again. But tell him it is not urgent.

A FEW DAYS LATER

Rosemarie is bringing her children to the house in the morning on her way to work. Joanne answers the door and she is not wearing the scarf. She is totally bald. Joanne sees Rosemarie's surprised look and Joanne begins to chuckle.

Joanne: I got tired of dealing with the scarf and decided the Creator wanted me bald and so I may as well be bald. It's a lot cooler now. [She chuckles again].

Rosemarie [she chuckles too]. Well, you seem to be doing better.

Joanne: Oh yeah. I finally turned my sorrow over to the Creator and after I did that, I just started to feel better.

Rosemarie: What did the children do when you showed them?

Joanne: Oh they were very surprised. But I told them I was sick and that my hair fell out from the medicine. They asked a lot of questions and some wanted to touch or rub my head gently. They were really very cute and sweet. They keep telling me to sit down and they bring me my water. So I am getting very spoiled. [she chuckles again].

Rosemarie: Well, this is good and much easier than braiding your hair every morning.

Joanne: Oh just. My morning activities take a lot less time now. I just soap up my head and don't worry about shampooing any more [both women chuckle]. END

Read Joanne's Story about Self-Healing

Joanne is involved with her beadwork when a young neighbor, Louise comes to visit. Their conversation went like this:

Louise: Good morning, Auntie. What are you doing?

Joanne: I'm beading this bag. You know this is very healing for me.

Louise: It is?

Joanne: Yes, when I bead this bag I put all my thoughts, worries and prayers into it. It helps me release all my troubles.

Louise: I never knew that.

Joanne: Then when I've finished my work on it for the day, I feel much better.

Louise: Maybe you could teach me. I have been dealing with a lot of things lately. I've been praying to find some way to release them.

Joanne: Here are the materials you need. I will show you how. END

Joe is 42 years old. He was diagnosed with head and neck cancer at age 40. He started smoking commercial / manufactured tobacco when he was 12.

He is a recovering alcoholic (2 years sobriety, 18 years of alcoholism). He is also diabetic and overweight (but not obese).

He is divorced and has 4 children:

Names and ages of his children

Sara, age 24

Mark age 23

Carol age 20

Rose age 18.

Carol and Rose live with their mother on the reservation, 150 miles one way from where Joe lives. Both Sara and Mark live on their own, both on the reservation about 180 miles from where Joe lives.

Joe was a hot shot fire fighter until he was fired because of his alcoholism when he was 34. He was unemployed at the time of his cancer diagnosis, but obtained help for his cancer care through the Veterans Administration.

He entered Alcoholic's Anonymous for the 5th time 2 weeks after receiving his cancer diagnosis.

His cancer is stage 3 (cancer cells were found in his lymph nodes and the tumor was about the size of a baseball on the right side of his neck, part of his jaw and mouth).

He lost teeth, part of his gums part of his tongue and part of his jaw. END

Chuck is 69 years old and diabetic. He was diagnosed with kidney cancer.

Names and ages of his children

Kenny age 50 years old

Samantha age 47

Read Chuck's Story about Diabetes during Chemo Treatment

Chuck calling his son.

Chuck: Kenny, it's Dad. My sugar's low again this morning. It's 69. That's kinda scary. It's never been that low before. What should I do?

Kenny: Do you feel sick?

Chuck: Well, I don't feel sick. I mean I don't feel great, cuz I'm doing chemo. But I haven't had it for a few days now, so I'm starting to feel a little better.

Kenny: Are you eating okay?

Chuck: I guess so. Food doesn't sound good. Or smell good. Or taste good. But I'm trying to eat a little something. Your sister came over and cooked me up some meat and potatoes last night. I ate a little.

Kenny: Let me check with my supervisor. I'll be right over.

(son arrives)

Chuck: Good to see you, son. Can you help me get dressed? You know, my clothes are gettin' kinda loose. I have to tighten my belt! Didn't think I'd ever have to do that. Since I started chemo a few weeks ago, I think they said I've lost 12 pounds.

Kenny: I think Cindy said the clinic told her that if you lose weight during treatment, they may need to cut back on your sugar pills. You know how they're always telling you to lose weight to get your sugar down? Well, you did! They always said, lose some weight and maybe you could get off some of those pills. I bet that's what's going on.

Let's get you dressed and get on over to the clinic. END