Survivorship Support

Remember that during times of cancer treatment, the patient is likely to need a lot of help and that the patient will recover from the symptoms after treatment ends (e.g., the side effects of chemotherapy will go away after the treatment ends and the patient will begin to get her energy and her hair and her appetite back again).
Most important: More and more people are surviving a cancer diagnosis and living good, happy lives for many years.

We all know that we are going to die some day. The goal is to help the cancer patient survive the cancer and that death not be related to the cancer.

Allowing other Loved Ones (perhaps outside of the family) to Help

• With food preparation, e.g., Have people sign up to take turns preparing an easy, healthy meal for the patient and her family.
• With transportation and emotional support back and forth to medical providers (again, consider a sign-up list of family, friends, co-workers who will help the patient keep her appointments ... sometimes very challenging because she may not want to go for her treatments)
• With daily living (e.g., to help patient dress, bathe)
• Find someone from the patient’s work site to help handle job-related issues, such as medical benefits

Sharing Your own feelings and fears.

• With Friends
• Through Cancer Support Groups and Counseling

Living your Life without guilt

• You still must keep your own family and yourself in balance while helping the cancer patient. Schedule some time every day to allow yourself to recovery, to rest, to deal with your own emotions.
• A fairly common sentiment: "I can’t make any plans because I feel too guilty when I leave her for the rest of the family to care for ... she likes me to be there." Although this may be very true, you cannot do it all yourself (although most of us try for a while). You are of no help to the patient if you allow yourself to become run down, over-tired, and irritable.

Knowing when to escape ... how to attain "balance"

• It may be for a half hour in the morning to do your morning prayers, or for a lunch break with your friends, or do work on a basket or jewelry; but you need to take breaks from being the primary care-giver. Such breaks help maintain some balance ... these breaks allow you to heal a bit yourself. They also allow you to be more patient and supportive when the cancer patient needs you.

Dealing with your own fears of also developing cancer

• Among the fears that occurs while caring for a cancer patient is that you too can develop cancer .... this is not to imply that cancer is "catchy" or "contagious", but rather that cancer has no prejudices and incredibly wonderful people as well as weaker personalities do develop cancer.
• This issue is not really, "Why Me?" but "Why Not ME?" Although certain behaviors increase one’s risks for developing cancer (like habitual tobacco use, abusive alcohol use, sedentary lifestyle, high fat and low fiber diet), others with healthy lifestyles can also develop cancer ... it is just less common.
• So you, the care-giver, need to evaluate your lifestyle and take part in healthier daily living and in cancer screening. Talk with your provider and let him / her know that you have a family member who has been diagnosed with cancer. The provider will review your own risks for developing the cancer.
• The closer the blood relationship, the more likely the provider is to feel that you are at greater risk. For example, is the cancer patient is a parent, sibling, or child of yours, you are a "first degree relative" and are more at risk than is an aunt or a cousin. Being more at risk does NOT mean you will develop cancer. It simply means that you may be 5% more like to develop cancer than is your neighbor who is not a blood relative.
• Throughout Indian Country, we "adopt" children, parents, and friends and make them part of our families. There frequently is no blood tie with these adoptive family members. There is no familial cancer risk to these adoptive family members.

Traditional Healers’ Advice

• Traditional Indian healers will conduct ceremonies for the loved ones and family members of the cancer patient, in addition to the ceremonies performed for the cancer patient. These ceremonies help the family express their own feelings and allow family members to become more supportive of one another while caring for the cancer patient. The ceremonies heal more than the crises at hand.

Cancer Support Groups and Resources

"Find a support group, speak to someone, let your feelings out, your fears, and just take it day by day ...I have come across a lot of people that are having breast cancer or had it. It's good for me to speak with them and to relate and to let ‘em know that there is life after cancer ... Life does get better."
Martha Red Willow - Oglala Sioux 

Sharing feelings / Sharing the Experience

• Talking about the cancer helps most people to learn how to deal with their feelings.. By talking about things that frighten them, it helps to address the fear and release the fear.

Support groups are very helpful to both the cancer patient and to the family and loved one of a cancer patient. There are many ways to work with support groups. Mary P. Lovato (bone cancer survivor; Santo Domingo Pueblo) coordinates and directs the largest Native American cancer support program in Indian Country. She provides trainings about twice each year and occasionally travels to the tribe or community to help train people there to run and operate their own support program. Mary has a toll-free number of 1- 877-771-8888.

Through the National Native American Cancer Survivors' Support Network, telephone support is available with other Native cancer survivors living in the North American continent. Mary can also connect you to these programs by calling the toll free number. Native American Cancer Initiatives (NACI) can also connect you to these services by calling 1-303-838-9359.

The National Cancer Institute's (NCI) Cancer Information Service (CIS) can usually help you find a local cancer survivors' support group. Dial 1-800-4-CANCER. The National Cancer Institute's Comprehensive Cancer Centers may be able to refer you to local cancer survivorship programs. There are over 20 such centers in the U.S. The CIS can provide regional contact information. These Centers are also involved in clinical trials and can answer questions about the patient or the family members' (especially "first degree relatives" like parents, children or siblings of cancer patients) eligibility for participation in a cancer trial .... typically free of cost.
The NCI also has an Office of Cancer Survivorship which can provide referral information for both cancer patients and their loved ones.

The National Susan G. Komen Breast Cancer Foundation also provides a toll free help line for both the cancer patient and for loved ones. Their number is: 1 (800) IM AWARE.

The National Alliance of Breast Cancer Organizations (NABCO) also provides counseling and referral information at 212-719-0154 or through the Internet at http://www.pmedia.com/avon.html

Y-Me for breast cancer hotline counseling, information and/or screening availability at 1-800-221- 2141.

Cancer Care, Inc. provides multiple resources, including information on support programs ....Their contact number is 1-800-813-HOPE.

The American Cancer Society has a variety of support programs, including Reach for Recovery and cancer survivors' support groups. Call your local American Cancer Society office for group meeting dates and times.

Organized Religions for Spiritual Healing

DEFINITION: "Spirituality" Spirituality can be defined as a belief system focusing on intangible elements that impart vitality and meaning to life's events. (MauganTA. The spiritual history. Arch Fam Med 1996:5:11-16.) Spirituality is expressed through formal religion (e.g., Christian, Moslem, Jewish, Buddhist), traditional Indian medicine, and other ways.

Many Native American patients are active within formal religious organizations. Common religions among Native peoples include the Native American Church, Catholic, Mormon, Methodist, Baptist, Lutheran, and occasionally Buddhist or Jewish. The minister or priest should be informed of the cancer diagnosis. Special support services are available from most churches, including the delivery of taped sermons for the patient who isn't well enough to attend church services ("shut-in" programs), meal preparation and delivery, home cleaning services, and so on. Most churches will also have special announcements to the congregation requesting their prayers for rapid and full recovery. Some will also have religious services specifically for the patient and her family.

The church can also provide spiritual support for the family members and loved ones of the cancer patient. Personalized counseling is available to help you and others deal with your own emotions and spiritual issues related to the cancer diagnosis.

Traditional Indian Healing

DEFINITION: "Traditional Indian Medicine" Traditional Indian Medicine varies by each tribe and the tribal belief systems, rituals and practices. According to Dr. Walt Hallow, the medicine man or woman is a catalyst to healing and spends as much time as needed to help restore harmony and health. Healing ceremonies and practices usually will include family members, who are considered integral to the healing process and are the patient's primary support system. The medicine is in part natural and empirical and in part supernatural and spiritual. Traditional Indian medicine emphasizes the patient's own power to restore good health. The Traditional healer dos not do the healing but assist as individuals in healing themselves.

(Hollow W.B. Chapter 6: Traditional Indian Medicine. In Galloway James M., Goldberg Bruce W, and Alpert Joseph S. Primary Care of Native American Patients: Diagnosis, Therapy, and Epidemiology. Butterworth and Heinemann. Boston, MA. 1999. pp. 31-38.)

Who are the Western Medical Providers who are involved with the cancer patient's treatment, recovery, healing from a breast cancer diagnosis?

1. Family Doctor
2. Anesthesiologist
3. Radiation Therapist
4. Oncologist
5. Chemotherapist
6. Plastic surgeon (reconstruction, nipple surgery)
7. *Oncology Nurse
8. Clinical Trials Providers and Support staff

Who are Other Members of the Healing Team?

1. Partner, spouse, parents, children
2. Spiritual Healer (i.e., 'Cancer' puts a hole in your spirit and you have to allow yourself to heal spiritually for your body to recover") A. Helping them learn how to help the patient B. Helping them learn to deal with their own feelings about the breast cancer diagnosis
3. Grandchildren ... a special role for healing
4. Native Sister or Promotore or lay health educator to function as Navigator
5. Co-workers and friends
6. Physical Therapist
7. Social Worker
8. Insurance "Agent"
9. Psychologist or Psychiatrist
10. Diet or nutrition specialist
11. Home Health Care Nursing
12. Career Counselor
13. Sexual Therapy

Biopsy

A cancer diagnosis is typically confirmed through a biopsy or similar type of tissue sampling. There are different types of biopsies, including needle aspiration, endoscopy, incisional, punch, excisional, and stereotactic. The type of biopsy selected is dependent on the type of cancer suspected, where it is located, size of the tumor, and so on. A diagnosis of cancer is not confirmed until the cells collected during the biopsy are examined under microscope and are identified as cancer cells.

• The biopsy is uncomfortable and medications can be taken to help reduce the discomfort, both during and following the biopsy. Some Native patients do not like to ask for such medication. If you accompany the woman to her biopsy appointment, ask the provider to provide such assistance for the patient.
• Someone should drive the patient to and from the appointment when a biopsy is performed. The patient is likely to need assistance getting home – emotionally, spiritually, mentally, and occasionally, physically.
• For most patients, the biopsy procedure is uncomfortable, but only for a short period of time. But occasionally, a patient will experience a great deal of pain during the biopsy. Sometimes the loved one is allowed to accompany the patient while the biopsy is being performed. Providers are not very enthusiastic about having non-medical people in the room because they frequently faint or vomit. Now the provider has to deal with a "crisis" while trying to do a sensitive and careful biopsy procedure.

Linda B’s Editorial. We have worked with Indian women who had been taking part in spiritual ceremonies to cure the cancer. But when we obtained the woman’s medical records, found that the woman had never even had a biopsy or other laboratory test to confirm the cancer diagnosis. A biopsy or equivalent test must be completed, and it is important to get a second diagnosis from a provider who is not associated with the first provider to confirm the patient’s diagnosis.

Types of Procedures to Determine If a Lump or Suspicious Cluster Is Cancer

Fine Needle Aspiration (FNA). Uses fine-gauge needle to take fluid out of a cyst or to take cells out of a lump. Usually done in doctor’s office or outpatient area of hospital. No scar. May be followed by excisional or incisional biopsy.

Core needle biopsy. Uses larger needle with special cutting edge to take a core of tissue out of breast. Use local anesthesia. Not used for very small lumps. Usually done in doctor’s office or outpatient area of hospital. Usually no scar

Needle localization; may also be called localization biopsy or mammographic localization with biopsy Two-part procedure. Fine needle containing a wire is put into breast so that tip rests in area of change seen on mammogram. Second mammogram confirms needle is in right place. Surgeon takes out lump or cluster in area where wire is. Fine needle portion done in radiology department, with surgery in operating room with local anesthesia. Scar depends upon amount of tissue taken out.

Stereotactic biopsy or stereotactic localization biopsy. Patient may be sitting up or lying on table with hole in it to allow breast to hang down. Computer plans exact position for needle. Either fluid or cells can be taken from lump. Local anesthesia may be needed. No scar.

Incisional. Takes out part of the lump to be examined by a pathologist. Uses local or general anesthesia. Usually done in outpatient department of hospital. Operation lasts less than one hour, followed by an hour or two in the recovery room. Small scar. Since the advent of fine needle and core biopsy, rarely used for breast cancer.

Excisional. Takes out the entire lump or the suspicious area. Used for lumps that are small. Uses local or general anesthesia. Usually done in the outpatient department of a hospital or a surgical center. Operation lasts less than one hour, followed by an hour or two in the recovery room. May change the shape of your breast, depending on size of lump, where located and how much additional tissue is removed. Scar depends on type of surgery done.

Printed with permission. Morra and Potts, Choices, Avon Books, 1994, p. 314.

Second Opinion

• Help the loved one find a way to get a second opinion from a medical provider about the cancer diagnosis. The patient is always advised to obtain second and third opinions of their diagnosis. This is not an insult to the original provider who diagnosed the cancer, but rather is prudent patient behavior. Unfortunately, the patient who uses IHS contracted health services (Purchased Referred Care) may have difficulty obtaining a second medical opinion from a facility other than the one contracted facility. But there are other oncologists within the facility who may be used for a second or third consultation and opinion (we have had several oncologists donate their time and the costs of additional tests to verify the accuracy of the diagnosis of cancer in American Indian patients who could not afford additional tests or appointments). Health providers should encourage patients to obtain a second opinion. It is better to have an accurate diagnosis than to erroneously diagnose and treat the wrong condition.
• If the cancer patient has insurance, contact the insurance agent and find out how you can get a second opinion within the next day or so from a facility other than the one which made the original diagnosis.

"Try and get second opinions ... I really didn’t have time to research it because I procrastinated so long ... the minute you think you have something unusual, a little lump or whatever ... get attention right away, because it does not go away."
Martha Red Willow - Oglala Sioux

"... I think if I had been more insistent, saying well, I really think I ought to have a second opinion on this, and I think that might be important .... I do think that a second opinion would have helped."
Mary Lou Davis - Caddo / Cherokee

"I was able to contact some people that gave information to me and . . . , it helped me understand that I didn't have to make a decision right away, so . . . with reading the books . . . I was able to at least understand the type of cancer that I had . . . and the different stages of development or whatever."
Candi Miller - Haida

Side Effects: Common side effects from surgery are pain, swelling, infection, and fatigue.

How You Can Help the Cancer Patient Before the Surgery

• Help the woman obtain spiritual and / or traditional healing to help prepare her for the surgical procedures.

Linda B's editorial: We have found that it was very helpful to both the cancer patient and the family / loved ones to take part in a spiritual healing or cleansing ceremony prior to having the surgery. If such a ceremony requires several months preparation, ask the healer for a ceremony that can help prepare both the patient and the family for the surgery. Ideally, no more that two months passes between the time of the medical diagnosis and confirmation (i.e., biopsy) and the beginning of surgery. Once the patient and the family have had the healing or cleansing, the patient seems to approach the surgery or other cancer treatments (immunotherapy, radiation, chemotherapy, hormonal therapy and other adjuvant therapies) in a much more positive perspective than prior to the ceremony. These patients also appear to be much stronger spiritually and more at ease or accepting of their current health situation. The ceremonies that require months of preparation should be postponed until the surgery and immediate follow-up care have been completed.

• Help the patient prepare questions that she and / or you would like to have answered about the surgery.
• If possible, have grandchildren and other children come over to visit with the woman the day before she goes to the hospital. Playing with the children and talking with the children has helped many of the women feel stronger about staying healthy so that they can continue to teach and enjoy the next generation. They approach the surgery with a strong drive to "get the surgery over" and get started with healing.
• If the hospital is several hours from the home, consider staying in a hotel the night prior to hospital check-in, especially if the patient is to check in very early in the morning (e.g., 6:30 a.m.). Money is usually as issue, so check with the American Cancer Society that is closest to the hospital, or a local hospice care center, or other facilities which may be available for the patient and loved one to stay during the surgery.
• For Native patients who have medical insurance: The patient has enough concerns to be considering as she approaches surgery. Someone needs to check with the health insurance agent and learn if there are any special requirements, restrictions or limitations related to her cancer treatment and follow-up care.
• Likewise, someone needs to check in with her employer and make certain that any emergency leave or other types of paperwork need to be completed so that her position is not filled during her medical leave.

Questions to Ask the Doctor Before the Breast Operation

• How long will the operation take?
• How should I expect to feel after my operation?
• Will I need blood transfusions during the operation and should I bank my own blood
• before going to the hospital?
• What will the scar look like? Please show me where it will be.
• Will I be in pain? What will you do for my pain?
• How long will I be in the hospital?
• Will I need special care at home after the surgery?
• When can I get back to my regular routine? Will I have to take any
• special precautions?
• What kind of exercises should I do?
• If I decide to have breast reconstruction, can it be done as part of this operation?
• If I decide not to have reconstruction, what other choices will I have?

(Printed with permission, Morra and Potts, Choices, Avon Books, 1994, p. 330.)

How You Can Help the Cancer Patient During the Surgery

• You can pray for the patient's rapid recovery to full health
• You need to take care of yourself and your family and get as much rest as possible. The length of the surgery may be a few hours to all day long.

Types of Operations

Partial mastectomy also called breast-conserving surgery, lumpectomy, or wide excision The lump in your breast is taken out, along with some of the normal breast tissue around it, to get clear margins. This is followed by radiation therapy to the part of the breast that remains. Survival rates are the same as with the modified radical mastectomy when cancer is treated in its early stages.

Advantages: If you are large-breasted, most of your breast is preserved. You have a better appearance than with a modified radical mastectomy. There is little possibility of loss of muscle strength.
Disadvantages: If you have small or medium-size breasts, you will have a noticeable change in your breast shape. You must undergo radiation treatments. If lymph nodes are not taken out, cancer may spread undetected.

Lymph node dissection also called axillary lymph node dissection Lymph nodes are taken out in the hollow of your armpit. Usually done at the same time as breast operation.

Advantages: Doctor can check to see if there is cancer in nodes.
Disadvantages: You have a risk of developing lymphedema.

Total or simple mastectomy Entire breast is removed.

Advantages: Your chest muscles are not taken out and there is little loss of arm strength. Breast reconstruction is easier.
Disadvantages: The breast is removed. This operation is not a common one today.

Modified radical mastectomy Entire breast, lining over chest muscles and lymph nodes under arm taken out. Usually only the smaller of the two chest muscles taken out. Survival rates are the same as with the partial mastectomy plus radiation therapy when cancer is treated in its early stages.

Advantages: Your chest muscles are not taken out. You can have breast reconstruction and you can plan it before your operation.
Disadvantages: Your breast is removed. You have a risk of developing lymphedema.

(Printed with permission, Morra and Potts, Choices, Avon Books, 1994, p. 322.)

How You Can Help the Cancer Patient After the Surgery

• Any surgery requires follow-up care. Talk with the providers, especially the oncology nurses and ask what you should do and how you should do it to help the patient recover from the surgery.
• All surgery involves some swelling, discoloration, and sanitary wound care. Have the hospital staff show you what to do and to watch you while you do it. It is one thing to watch a nurse cleanse a wound and quite a different process when you are the one do the cleansing. Let the nursing or other provider staff help you learn how to care for the patient.
• If shunts or plastic pipes remain in the wound to allow for drainage of fluid, you will need special training from the providers on how to care for such post-operative items in a sterile manner.
• You will need to help the patient get out of bed and walk and move. This is always important to help reduce the likelihood of pneumonia or other infections.
• Ask the provider how much, if at all, the patient is allowed to move her arm(s), especially if lymph nodes were removed. For some women, they are not to move the arm for several days following surgery. For others, they are to begin moving the arm on the day following surgery. This depends on when the incision was made and how long and how deep the cut.
• Bring a soft, small pillow to the home for the patient to keep her arm elevated (i.e., the arm that had the lymph nodes removed needs to be higher than the patient's heart). Talk with the provider about how to keep the arm from swelling (the arm that had lymph nodes removed).
• Watch the woman carefully for unusual swelling, pain, or fever. Infections can follow any surgery and must be cared for immediately.
• When driving the patient home, try to find a route with few potholes .... try to avoid road bumps and dips. The incisions are typically very tender and slight jarring can be very painful. For many roads on the reservation, it is not possible to find a paved, smooth road. Inform the doctor that the ride is likely to be rough and s/he may prescribe some additional pain medication to help her make the trip home.
• Some patients like to lie down for the drive home; others are anxious to see out the windows. Have the car / truck prepared for either need.
• If there are family members who tend to be noisy (e.g., small children), talk with the patient about if she would like to have them stay elsewhere for a few nights. Some patients feel the need for sound rest and do not want the children to see them acting so tired. They do not want little people to become worried. Other patients like the sound of young ones making noise, although it does disrupt their sleep. But their voices in play help the patients fight to recovery from the surgery and to heal so that they can play with the children too.

(there are) 7 of my lymph nodes that were removed and I kept thinking had I not waited long maybe, . . . they wouldn't have done that. But it's, it's to late now to even think that. And I really get scared thinking what if I had waited much longer. It would have been passed the lymph nodes and some place else. It's really scary to even think that. Gloria Suazo (Taos Pueblo)

• With providers' permission, you may begin to help the patient exercise. She typically is not to pick up anything more than one or two pounds for a few weeks, especially if many lymph nodes were removed. The types of exercise may include squeezing a wash cloth. She will probably be asked to try to raise and lower her arm for a specific number of repetitions (e.g., within a few days of surgery, the providers may want her to try to raise the arm 6" to 12" high with the elbow straight for five times ... and to do that every 2 hours .... the providers will have specific instructions).
• Try to find a way to make the exercises enjoyable. A group of survivors from Grand Rapids, Michigan took up fly fishing to help them recuperate from their lymph node removal and breast surgeries.

Linda B's Editorial. A "biopsy" and "lumpectomy" are not the same procedure. Many of our Indian patients have stated that they had a lumpectomy to identify the cancer, but these were typically "biopsies" to confirm the cancer diagnosis. A "lumpectomy" is a surgical procedure to remove the cancer cells and immediately surrounding tissue. A "lumpectomy" is sometimes called, "breast conserving" surgery.

"I was very fortunate in many ways because I had a good friend of mine who just had gone through the same process ... so she gave me information and when I started comparing what the research reports were saying about mastectomy versus lumpectomy, I decided my chances were as good with lumpectomy as it is with mastectomy, so ... I asked to have the lumpectomy. I think I made an informed decision."
Jennie Joe (Navajo)

"But on the sixth day that I was in the hospital. I just got up, I felt good. I stripped my bed, I start putting all my stuff and getting all my flowers together. And the nurse comes in and says, "What are you doing?" I said "I'm ready to go home now", they said "you can't go home, you've got one more day, you need to stay one more day". And I'm like, oh man, so make my bed again, put everything back out. Trying to take my time, and figure out. . . . , so I go "Can I have popcorn or anything like this?". Then people started coming to see me, my relatives and I call them, the "prayer chain". All my aunts and uncles came and prayed and I felt real strong and positive and I was ready to go home. On the seventh day they said, well you better wait for the doctor to come around.

Well I have the doctor's beeper. I beeped him at 7:00 a.m. and I said, Dr. Little you need to release me now, I'm tired of stripping my bed and making it again. And he goes, "okay, we'll be by to see you and we'll let you go." They finally let me go home. My brother had put together a party with a picture of my son holding his head saying "Home Alone". There were balloons everywhere and I had my sister washing dishes, I have another one making beds. And I'm like, wow, this is cool, you know."
Cindy Thornton (Western Cherokee)

"And here when I got to the doctor he said, "Norma," he said, "we don't have to do a radical, we can do ... a "lumpectomy". And I said what does that mean? He said they'll take the cancerous, you know, cut most of the cancerous part out and then I'd ... either take radiation or chemo. And so I said, well you know that's fine, you know, .... I'd go for that .... cause half a breast is better than none at all."
Norma Staples (Mandan)

Side Effects

The side effects may vary depending upon which technique is used for the breast reconstruction. The side effects range from swelling, pain, infection to breasts of different sizes, shapes, and nipples in different locations. Positive side effect of the abdominal flap is that the woman also experiences a "tummy tuck"

How You Can Help the Cancer Patient Before the Breast Reconstruction Surgery

• Breast cancer survivors vary greatly in their desire for breast reconstruction. Many of the younger patients prefer to have reconstruction. Indian Health Service (IHS) contracted health services is unlikely to cover reconstruction and alternative sources of financial aid for such surgery need to be pursued- ideally by someone other than herself (to reduce the likelihood of her becoming overly stressed and concerned).

"So the breast was removed and I had the immediate reconstruction following that, it was a very long surgery… It was eight hours under anesthesia, it was difficult. … but I am very happy with the results."
Candi Miller (Haida)

"… as we started with part of my reconstruction, it was incredible… I had an infection in my chest and it was making me heal deformed. And I had a staph infection that was just all over my chest from the mastectomy … it was just sucking my chest in and it made me feel really distorted… But they were still able to do the implants and that was fine. I questioned that, because … I feel bad that I have to ever question my identity as a woman and what it is that makes me feel like a woman shouldn't be on the outside, it should be on the inside. I did get the implants and I healed, it took along time but, uhm. I stayed in bed, I took care of myself. I had a lot of help… by this point … they were doing my surgeries in stages because they couldn't do it all at once. (The areola and nipple reconstruction) In some states, they don't think that's allowable, or necessary for a woman to have this finished. And I, I was so outraged, because (the State) declined me. They started my procedure and then they said that it wasn't necessary and that I wouldn't be able to be finished. And I couldn't believe this. I was so outraged, but I wasn't going to give up. I mean … the government …(was) … deciding what's right for me. And I sent them my pictures, and I called, and I'm like "This is crazy… I'm a thirty-two year old woman. How can you tell me that this isn't necessary? This is necessary." And it was a matter of communicating and not giving up hope."
Anonymous

• Be available to discuss her thoughts about reconstruction and how it may or may not affect your personal or intimate relationship.

Questions to Ask Your Plastic Surgeon Before You Have Breast Reconstruction

• What are the different choices of reconstruction surgery? What type do you think is best for me? Why?
• Should I have the reconstruction at the time of my mastectomy or should I wait until later? How much later can I have it done? If I need to have chemotherapy, should I wait until I have finished that treatment?
• What are the advantages and disadvantages of having reconstruction at the time of my mastectomy? Of waiting to have it until later?
• What are the side effects and risks that I should consider?
• Will you be using tissue expanders? A saline-filled implant? Can you use my own tissue?
• Will you explain how the surgery will be done? What kind of anesthesia will you use?
• What will I look like after the surgery? What kind of scars will I have and where will they be?
• What will my new breasts look like? Will it match my other breast? Will it change over time? Will I have to have anything done to my other breast?
• Can I have my nipple reconstructed? How will it be done?
• What is your experience with this operation?
• Do you have any before-and-after pictures you can show me?
• May I talk with someone who has had the operation?
• How many operations will I have to have? Will I need to be in the hospital each time? For how long? How long will I need for recovery?
• Will I be in much pain?
• Will I need to wear a special bra after my operation?
• How much will it cost? Will my insurance cover any part of it?
• What can be done if the surgery is not successful?

(Printed with permission, Morra and Potts, Choices, Avon Books, 1994, p. 330.)

Operation Choices for Breast Reconstruction

Expander Can be of several types. Empty silicone sack or double envelope with silicone layer and empty sack implanted under skin and muscle, gradually filled with saline (saltwater) solution through a valve over a period of weeks, stretching skin. Local or general anesthesia. Inpatient or outpatient. Surgery takes 1 to 2 hours.

Most common type of reconstruction. Provides greatest flexibility in breast size. Requires additional office visits (15 to 30 minutes) to add saltwater solution to stretch skin. May be uncomfortable for some women. Can have problems with valve. Another operation often needed to convert expander to permanent implant.

Implant, also called fixed-volume implant Sack, filled with silicone gel or saline fluid, implanted under the skin and chest muscle. General or local anesthesia used. Can be outpatient or inpatient. Surgery takes 1 to 2 hours. Short recovery time. Low rate of complications. Implants filled with silicone gel can be used only if a woman is enrolled in a clinical trial. Saline filled have silicone layer or envelope that contains filling.

Latissimus flap, also called back flap. Muscle called latissimus dorsi, and eye-shaped wedge of skin moved from back to chest wall and sewn in place, leaving tissue attached to original blood supply. Inpatient with general anesthesia. Surgery takes 2 to 4 hours. May need blood transfusion. Major surgery that can be painful. Need to stay in hospital 3 to 6 days. Scar left on back or side. May have drain in for several weeks. May have fluid buildup in back area. May have slight bulge under arm that will shrink in time.

TRAM flap (transverse rectus abdominous myocutaneous), also called tummy tuck. Fat, skin and muscle taken from stomach area and moved up to form breast. Tissue usually remains connected to abdominal blood supply, although in some cases microsurgery used. Inpatient, with general anesthesia. Surgery takes 3 to 5 hours, with general anesthesia. Surgery takes 3 to 8 hours. May need blood transfusion. Major surgery that can be painful. Hospital stay of several days. Recovery period may take several weeks, including inability of patient to stand straight for days or even weeks. Healing problems may occur, including thick tissue on flap. Scar in abdominal area.

Microsurgery, also called free flap. Muscle and fat from other parts of body, such as buttock or thigh, are cut free from blood supply, moved to breast and reattached to breast blood supply by microsurgery. Inpatient with general anesthesia. Surgery takes 3 to 8 hours. May need blood transfusion. Major surgery that can be painful. Hospital stay of several days. Recovery period may take several weeks, including inability of patient to stand straight for days or even weeks. Healing problems may occur, including thick tissue on flap. Scar in abdominal area.

Nipple Can be made from existing skin, pinched and tacked to make nipple, or created from tissue from other nipple or groin and attache to breast mound. Areola reconstruction may also be done. May need tattoo to match color of other breast. If created from other nipple or groin, that area will feel tender for about 2 weeks.

(Printed with permission, Morra and Potts, Choices, Avon Books, 1994, p. 357.)

Side Effects from chemotherapy vary. Among the more common side effects are feeling tired (fatigued, lethargy), nausea, diarrhea or constipation, and body hair loss (due to the effect of the drugs on the DNA of hair follicles). Every cancer patient responds differently to the combination of chemotherapy drugs.

"Chemotherapy" has been used since 1940's (World War II, "mustard gas"), but many changes have occurred in the types of drugs used, dosage, and frequency. Chemotherapy is sometimes recommended prior to surgery to shrink the tumor to make it more feasible for the surgeon to remove the entire tumor during surgery. There are hundreds of drugs and drug combinations. In general, chemotherapy drugs affects the DNA of the cells by interfering with cell duplication. These drugs affect both the cancerous and the healthy cell DNA. The healthy cells that are particularly susceptible to chemotherapeutic drugs are those which multiply quickly, like the skin (including body, facial, and head hair), gastrointestinal tract, and bone marrow. (Burhansstipanov, 1997)

What is very important to remember is that these side effects are temporary and gradually go away after the chemotherapy treatments end.    

Examples of side effects, of which most chemotherapy patients experience at least a few, include the following:

• Fatigue (e.g.,
• lethargy)
• Weakness
• Nausea
• Lack of appetite
• Vomiting
• Weight Loss
• Fever
• Chills
• Fluid retention
• Diarrhea
• Constipation
• Blood clotting problems
• Headache
• Muscle aches
• Burning or painful
• sensation during urination
• Vaginal infections
• Tingling, burning sensation in hands or feet
• Hair loss
• Skin changes (redness, dryness, itchiness, acne)
• Brittle nails
• Sores in the throat and mouth

How You Can Help the Cancer Patient Before the Chemotherapy Appointment

• Coordinate transportation to and from the chemotherapy sessions. This means to have someone drive the patient both to the chemotherapy appointment and from the appointment.
• Have fruit juice or another non-alcoholic liquid drink ready for the patient to have on hand during the chemotherapy treatment.
• If the chemotherapy session is to be fairly long (and especially if the cancer patient is also diabetic), pack a healthy snack for her to eat if she feels hungry during her therapy.
• Pack extra water and blankets in the car/truck. If possible, also have some apple or carrot juice handy in case the patient needs something.

How You can Help the Cancer Patient During the Chemotherapy

• Try to vary the experience to make is more comfortable or acceptable to the woman. For example one woman said that it was very helpful when her grandchildren occasionally accompanied her to her chemotherapy sessions. The children brought toys and played near her feet during the treatments. Seeing the children play helped the patient keep focused on why she was completing the chemotherapy sessions ... so continue to see her grandchildren play and grow.

Linda B’s Editorial. When you go in for a chemotherapy appointment, there are usually fairly comfortable chairs around the room, a television and/or radio and reading lamps. There are usually other people in the same room all receiving chemotherapy. The providers connect the bottle of chemotherapy drugs to the patient through an IV (intravenous tube) so that the medicine goes directly into the blood stream. Chemotherapy "sessions" may be as short at 1 hour one day a week, or can be 9 hours three times a week. Different types of drugs are used to treat different stages of cancer. The length of each session and type of drugs used for chemotherapy depend on the stage of cancer and type of cancer cell (e.g., histologic grade and stage). This means the person sitting next to the "loved one" may also be a breast cancer patient, but may be receiving totally different medications within their chemotherapy.

• Take turns and have other family members, friends, healers come visit during the sessions.
• Invite a tribal story teller to come visit and share traditional stories with the patient of strength, courage and/or battles with unusual enemies / contestants / or rivals.
• If her chemotherapy sessions are longer than 30 minutes, remind her to drink some juice (e.g., apple or carrot).
• If she is diabetic, remind her to eat a "healthy snack" to keep her blood sugar at a healthy level. Remind the providers that she is diabetic so that they can keep an eye on sudden changes in her behavior (i.e., monitor her reaction to treatment).
• If the chemotherapy room has a VCR, bring in movies or tapes of her favorite shows to help distract her from simply sitting.
• Several of the Native women have commented that they enjoyed being able to sew or do other crafts while receiving their chemotherapy. Check the room and make certain that she has a table to set her tools on. Also check to make certain that there is sufficient light for her to see. If not, bring in an extra light with you to have set next to her to illuminate her beadwork, basket reeds, sewing, etc.
• Ask the patient how she would like to be entertained during the chemo. Provider her with options and allow her the self-respect to choose how she wishes the treatment to proceed.
• Some women enjoy visiting with the others who are also receiving chemo.
• Some want to have a healer visit with them.
• Some want a family member.
• Some occasionally want to be left alone during their treatment.
• Bring a blanket. During chemotherapy, cold, clear liquid medication is slowly dripped into the patient’s blood stream. Most patients feel "cold" after the first 30 minutes or hour treatment. We have asked healers to bless personal Indian blankets for the women to have with them during their treatments for both spiritual strength and physical warmth.

"It wasn’t as bad as I thought. I didn’t get as sick as I thought I was going to get. It wasn’t fun, but it was worth it all. Um, my husband went with me and when I did the chemo he would stand behind me, you know, with his hands on my shoulders. And it was really neat because I got sick and he got sick at the same time. Um, when I started losing my hair, he lost his hair too. And everything I went through when I’d go in to get my chemo, I guess it was just like the smell of the, it could have just been the alcohol that they, you know, clean before they start your chemo. Ah, I don’t know what was the key, my husband would get sick as soon as we went in. His face would turn gray, but he stayed there. And the doctor would say, "Mr. Trijillo you don’t need to stand there behind her, you know." And he would say, "I know I don’t have to, I want to." So I had a lot of support, and ah, it was good to know that so many people loved me and that were behind me and that were pulling for me and, um, I just thank the Lord that, I feel like I am healed."
Evelyn Trujillo (Yaqui)

"CI went back (to work) first part of March and I still had two more treatments, and I was still, well I wasn’t bald but I still had to wear that wig and the people that I work with were really nice and were understanding and that helped a lot. And the supervisor came down. To be around people and not to be home, if you get sick, it uh, it helped to be around people." 
Carolyn Spotted Horse (Crow)

"And my brother ... was something else, ... he says, "Well Sis, how are you doing on your with your chemotherapy," and I say,"I’m doing fine. Some days I’ll come home and I’ll go to sleep for about three days, and there are other times I’ll come home and I’ll clean my house and I’ll go shopping." It just depended you know. And he says, "are you bald yet?" And I say, "no," and he says, "oh shucks, I always wanted a bald sister." And I say, "no, the wig is still up in the closet, you know."
Ruth Demitt (Athabascan/Tanacross)

How you can Help the Cancer Patient After Her Chemotherapy

• Pack a bucket in the truck / car, in case the patient suddenly becomes ill and needs to vomit during the drive home. This need to vomit may have very little warning. The embarrassment following vomiting is a little less if the substance can be contained in the bucket rather than throughout the truck / car. The bucket can also be emptied outside rather than remaining in the vehicle for the entire ride home.
• Have a place set up for her to lie down during the drive home. She may suddenly feel tired and need to lay down. Have a couple of pillows and blanket in the car for her use.
• Have one small pillow available for the patient who has had some lymph nodes removed and needs to keep her arm elevated to prevent swelling (this is called, "lymphedema"). Again, we are having elder Indian women make our pillows and having a traditional Indian healer bless the pillows so that the woman can derive some spiritual strength from the pillow.

General Supportive Care throughout Chemotherapy

• Plan to have others help with all meals, household chores, including writing monthly bills throughout the woman’s chemotherapy (see Appendix "A" for examples of sign up sheets for family, friends, and co-workers).
• Many people get sores in their mouths during chemotherapy. Acidic foods are too painful to eat (e.g., vinegar dressings, orange juice). See the NCI booklet by Marion Morra on Eating Tips for Cancer Patients for specific suggestions (Call 1-800-4-CANCER to obtain a free copy).
• Gentle herbal teas with honey (to help with sore throat) may be tolerable for the patient.
• If the patient is losing weight during chemotherapy, try a variety of recipes to find food that is acceptable. there is a very strong metallic taste that remains in the mouth and affects the taste buds .. so foods which are normally palatable, may simply taste metallic or have no flavor at all.
• Frozen yogurt fruit shakes (with real fruit, like banana, if possible) are sometimes acceptable ... frozen yogurt does not contain "lactose" ... Many Indian people are "lactose-intolerant" (e.g., body makes a lot of gas after eating or drinking milk products that contain "lactose").
• Coordinate someone who can help clean the house throughout the chemotherapy. This needs to be someone the patient trusts (See Appendix "B").

Radiation therapy has been in use for over 100 years. High doses of radiation kill cells or keep them from growing and dividing. Since cancer cells grow at a faster rate than do normal cells, radiation therapy can be very effective. Normal cells are also destroyed by radiation which is why providers monitor the intensity carefully. About half of all people who are diagnosed with cancer undergo radiation.

"Radiation Therapy" goes by different names:

• radiotherapy
• x-ray therapy
• cobalt therapy
• electron beam therapy
• irradiation

Side Effects: Most side effects from radiation therapy (e.g., itching, skin reddening and skin burn) go away after a few weeks. Some side effects require immediate response from the provider, such as coughing, fever, or unusual pain. The provider takes multiple blood tests from the patient to monitor the white blood cell and platelet counts which drop during radiation treatment. When side effects become too severe, radiation is stopped and the patient must have some time to recover and heal before continuing the treatment. Side effects from radiation sometimes do not occur for several weeks. When they do occur, make certain that the provider knows about all of the side effects. DO NOT WORRY, but do talk with both the patient and the provider about the side effects. Talk with the provider before using any treatment, including lotions for the sunburned or dry skin. Lotions that normally respond to such conditions very well, such as aloe lotions, actually can irritate irradiation "burn" or dry skin.

• Fatigue (e.g., lethargy); Feeling very weak or tired
• Dry, itchy skin; sunburned
• Loss of appetite
• Soreness and swelling
• Constipation
• Cough
• Fever
• Pain

How You Can Help the Cancer Patient Before the Radiation Therapy Begins

• Radiation will interfere with the healing from the surgery. The cancer patient must wait until her surgery has healed before beginning the radiation therapy.
• Work with a healer or story teller to help the patient prepare for how she will deal with uncomfortable feelings during the therapy. For example, the patient may be strapped down to help her stay in one position so that the radiation goes where it is supposed to go, and not affect other parts of the body. Then the machine may move to focus on different angle of the tumor (or place where the tumor was removed). The sound and the closeness of the equipment frightens some patients. Help the patient prepare for how she can deal with hearing the sounds, or the sudden movement of the equipment.

"I got scared when the big machine came down on me cause I never experienced nothing like that in my life, so I got scared so I started praying in my own prayers. I asked the machine, whatever you are, believe and get me well. That’s what I said to the machine, get me well."
  Mary Lou Calabaza (Santo Domingo Pueblo)

• One healer prepared special prayers for the patient to say while she was going through the radiation therapy. She brought her token bag with her into the radiation treatment room so that she could hold the bag with the special "gifts" the healer prepared for her while she said her personalized prayers.
• You can go with the patient when she is fitted for a cast or any other preparation to help her stay in one position. There are different techniques that are used to help her stay in a single position.
• The radiation oncologist will mark the area on her skin where the radiation is to be directed. They will use India ink or another relatively permanent marker. She needs to avoid scrubbing off the mark. Once the mark is made, some women have had traditional healers do ceremonies over the marked area. Nothing should be placed directly on the marked area prior to or during treatment (such as a poultice)

Family members are sometimes concerned that the patient is radioactive following radiation therapy. Talk with the provider about your feelings and your concerns. If very high dosages of radiation are used, the provider may recommend that the woman not hold infants or very small children for a short period of time. For most patients, the dosage is focused on a local area and such concerns do not exist.

How You can Help the Cancer Patient During the Radiation Therapy

• Radiation is given in different ways. If the patient has an implant, you may only need to help her get to and from her appointments and to help her deal with side effects, if any.
• If she is receiving radiation at the health care facility, you cannot be in the same room with the cancer patient while the treatment is being done (because the providers do not want you to be exposed to unnecessary radiation).
• Some radiation rooms have speakers or intercoms to outside waiting areas. If an intercom system or something similar exists, you can talk with the patient as long as talking does not result in her moving her body.
• Some patients have severe reactions to radiation which results in having to take additional medical prescriptive drugs, like cortisone (e.g., Prednisone). You can help by picking up the medications and making certain that any and all medications are taken as directed by the provider.

How You can Help the Cancer Patient After the Radiation Therapy

• Most patients do not feel too badly after the first few treatments and she may require little assistance initially (e.g., help walking to the car). However, she can suddenly begin to experience side effects. The most common are feeling very weak and tired, and experiencing red, tender dry skin on the area where the radiation is being focused. Be prepared to help her when she feels tired. See the Section on "How to Help the Patient When she is Feeling Weak." For the skin problems, ask the provider for a lotion. They are likely to provide a sulfa cream.
• The patients who are going through radiation therapy are usually extra sensitive to sunlight and heat. They are likely to have no tolerance to heat.
• If the vehicle you use to transport the patient to and from the radiation therapy is not air conditioned, borrow a car or truck that is.
• If the patient must walk in the sunshine for daily activities (such as walking to the mail box to pick up mail, or to feed and water animals), have other members of the family help with these duties, or provide an umbrella or a wrap to help shield her from the heat of the sun.

Side Effects

The side effects may vary depending upon which technique is used for the breast reconstruction. The side effects range from swelling, pain, infection to breasts of different sizes, shapes, and nipples in different locations. Positive side effect of the abdominal flap is that the woman also experiences a "tummy tuck"

How You Can Help the Cancer Patient Before the Breast Reconstruction Surgery

• Breast cancer survivors vary greatly in their desire for breast reconstruction. Many of the younger patients prefer to have reconstruction. Indian Health Service (IHS) contracted health services is unlikely to cover reconstruction and alternative sources of financial aid for such surgery need to be pursued– ideally by someone other than herself (to reduce the likelihood of her becoming overly stressed and concerned).

"So the breast was removed and I had the immediate reconstruction following that, it was a very long surgery... It was eight hours under anesthesia, it was difficult. . . . but I am very happy with the results.."
Candi Miller - Haida

"... as we started with part of my reconstruction, it was incredible... I had an infection in my chest and it was making me heal deformed. And I had a staph infection that was just all over my chest from the mastectomy ... it was just sucking my chest in and it made me feel really distorted... But they were still able to do the implants and that was fine. I questioned that, because ... I feel bad that I have to ever question my identity as a woman and what it is that makes me feel like a woman shouldn’t be on the outside, it should be on the inside. I did get the implants and I healed, it took along time but, uhm. I stayed in bed, I took care of myself. I had a lot of help... by this point ... they were doing my surgeries in stages because they couldn’t do it all at once. (The areola and nipple reconstruction) In some states, they don’t think that’s allowable, or necessary for a woman to have this finished. And I, I was so outraged, because (the State) declined me. They started my procedure and then they said that it wasn’t necessary and that I wouldn’t be able to be finished. And I couldn’t believe this. I was so outraged, but I wasn’t going to give up. I mean ... the government ...(was) ... deciding what’s right for me. And I sent them my pictures, and I called, and I’m like "This is crazy... I’m a thirty-two year old woman. How can you tell me that this isn’t necessary? This is necessary." And it was a matter of communicating and not giving up hope."
Anonymous

• Be available to discuss her thoughts about reconstruction and how it may or may not affect your personal or intimate relationship.

Questions to Ask Your Plastic Surgeon Before You Have Breast Reconstruction

• What are the different choices of reconstruction surgery? What type do you think is best for me? Why?
• Should I have the reconstruction at the time of my mastectomy or should I wait until later? How much later can I have it done? If I need to have chemotherapy, should I wait until I have finished that treatment?
• What are the advantages and disadvantages of having reconstruction at the time of my mastectomy? Of waiting to have it until later?
• What are the side effects and risks that I should consider?
• Will you be using tissue expanders? A saline-filled implant? Can you use my own tissue?
• Will you explain how the surgery will be done? What kind of anesthesia will you use?
• What will I look like after the surgery? What kind of scars will I have and where will they be?
• What will my new breasts look like? Will it match my other breast? Will it change over time? Will I have to have anything done to my other breast?
• Can I have my nipple reconstructed? How will it be done?
• What is your experience with this operation?
• Do you have any before-and-after pictures you can show me?
• May I talk with someone who has had the operation?
• How many operations will I have to have? Will I need to be in the hospital each time? For how long? How long will I need for recovery?
• Will I be in much pain?
• Will I need to wear a special bra after my operation?
• How much will it cost? Will my insurance cover any part of it?
• What can be done if the surgery is not successful?

(Printed with permission, Morra and Potts, Choices, Avon Books, 1994, p. 330.)

Operation Choices for Breast Reconstruction

Expander Can be of several types. Empty silicone sack or double envelope with silicone layer and empty sack implanted under skin and muscle, gradually filled with saline (saltwater) solution through a valve over a period of weeks, stretching skin. Local or general anesthesia. Inpatient or outpatient. Surgery takes 1 to 2 hours.

Most common type of reconstruction. Provides greatest flexibility in breast size. Requires additional office visits (15 to 30 minutes) to add saltwater solution to stretch skin. May be uncomfortable for some women. Can have problems with valve. Another operation often needed to convert expander to permanent implant.

Implant, also called fixed-volume implant Sack, filled with silicone gel or saline fluid, implanted under the skin and chest muscle. General or local anesthesia used. Can be outpatient or inpatient. Surgery takes 1 to 2 hours. Short recovery time. Low rate of complications. Implants filled with silicone gel can be used only if a woman is enrolled in a clinical trial. Saline filled have silicone layer or envelope that contains filling.

Latissimus flap, also called back flap. Muscle called latissimus dorsi, and eye-shaped wedge of skin moved from back to chest wall and sewn in place, leaving tissue attached to original blood supply. Inpatient with general anesthesia. Surgery takes 2 to 4 hours. May need blood transfusion. Major surgery that can be painful. Need to stay in hospital 3 to 6 days. Scar left on back or side. May have drain in for several weeks. May have fluid buildup in back area. May have slight bulge under arm that will shrink in time.

TRAM flap (transverse rectus abdominous myocutaneous), also called tummy tuck. Fat, skin and muscle taken from stomach area and moved up to form breast. Tissue usually remains connected to abdominal blood supply, although in some cases microsurgery used. Inpatient, with general anesthesia. Surgery takes 3 to 5 hours, with general anesthesia. Surgery takes 3 to 8 hours. May need blood transfusion. Major surgery that can be painful. Hospital stay of several days. Recovery period may take several weeks, including inability of patient to stand straight for days or even weeks. Healing problems may occur, including thick tissue on flap. Scar in abdominal area.

Microsurgery, also called free flap. Muscle and fat from other parts of body, such as buttock or thigh, are cut free from blood supply, moved to breast and reattached to breast blood supply by microsurgery. Inpatient with general anesthesia. Surgery takes 3 to 8 hours. May need blood transfusion. Major surgery that can be painful. Hospital stay of several days. Recovery period may take several weeks, including inability of patient to stand straight for days or even weeks. Healing problems may occur, including thick tissue on flap. Scar in abdominal area.

Nipple Can be made from existing skin, pinched and tacked to make nipple, or created from tissue from other nipple or groin and attache to breast mound. Areola reconstruction also may be done. May need tattoo to match color of other breast. If created from other nipple or groin, that area will feel tender for about 2 weeks.

(Printed with permission, Morra and Potts, Choices, Avon Books, 1994, p. 357.)

Fatigue (e.g., lethargy); Feeling very weak or tired
Dry, itchy skin; sunburned
Loss of appetite
Soreness and swelling
Constipation
Cough
Fever
Pain

How You Can Help the Cancer Patient Before the Radiation Therapy Begins

• Radiation will interfere with the healing from the surgery. The cancer patient must wait until her surgery has healed before beginning the radiation therapy.
• Work with a healer or story teller to help the patient prepare for how she will deal with uncomfortable feelings during the therapy. For example, the patient may be strapped down to help her stay in one position so that the radiation goes where it is supposed to go, and not affect other parts of the body. Then the machine may move to focus on different angle of the tumor (or place where the tumor was removed). The sound and the closeness of the equipment frightens some patients. Help the patient prepare for how she can deal with hearing the sounds, or the sudden movement of the equipment.

"I got scared when the big machine came down on me cause I never experienced nothing like that in my life, so I got scared so I started praying in my own prayers. I asked the machine, whatever you are, believe and get me well. That’s what I said to the machine, get me well."
  Mary Lou Calabaza (Santo Domingo Pueblo)

• One healer prepared special prayers for the patient to say while she was going through the radiation therapy. She brought her token bag with her into the radiation treatment room so that she could hold the bag with the special "gifts" the healer prepared for her while she said her personalized prayers.
• You can go with the patient when she is fitted for a cast or any other preparation to help her stay in one position. There are different techniques that are used to help her stay in a single position.
• The radiation oncologist will mark the area on her skin where the radiation is to be directed. They will use India ink or another relatively permanent marker. She needs to avoid scrubbing off the mark. Once the mark is made, some women have had traditional healers do ceremonies over the marked area. Nothing should be placed directly on the marked area prior to or during treatment (such as a poultice)

Family members are sometimes concerned that the patient is radioactive following radiation therapy. Talk with the provider about your feelings and your concerns. If very high dosages of radiation are used, the provider may recommend that the woman not hold infants or very small children for a short period of time. For most patients, the dosage is focused on a local area and such concerns do not exist.

How You can Help the Cancer Patient During the Radiation Therapy

• Radiation is given in different ways. If the patient has an implant, you may only need to help her get to and from her appointments and to help her deal with side effects, if any.
• If she is receiving radiation at the health care facility, you cannot be in the same room with the cancer patient while the treatment is being done (because the providers do not want you to be exposed to unnecessary radiation).
• Some radiation rooms have speakers or intercoms to outside waiting areas. If an intercom system or something similar exists, you can talk with the patient as long as talking does not result in her moving her body.
• Some patients have severe reactions to radiation which results in having to take additional medical prescriptive drugs, like cortisone (e.g., Prednisone). You can help by picking up the medications and making certain that any and all medications are taken as directed by the provider.

How You can Help the Cancer Patient After the Radiation Therapy

• Most patients do not feel too badly after the first few treatments and she may require little assistance initially (e.g., help walking to the car). However, she can suddenly begin to experience side effects. The most common are feeling very weak and tired, and experiencing red, tender dry skin on the area where the radiation is being focused. Be prepared to help her when she feels tired. See the Section on "How to Help the Patient When she is Feeling Weak." For the skin problems, ask the provider for a lotion. They are likely to provide a sulfa cream.
• The patients who are going through radiation therapy are usually extra sensitive to sunlight and heat. They are likely to have no tolerance to heat.
• If the vehicle you use to transport the patient to and from the radiation therapy is not air conditioned, borrow a car or truck that is.
• If the patient must walk in the sunshine for daily activities (such as walking to the mail box to pick up mail, or to feed and water animals), have other members of the family help with these duties, or provide an umbrella or a wrap to help shield her from the heat of the sun.

Dressing

Most cancer patients need some assistance with dressing the first few days following surgery. If the woman has had lymph nodes removed, she may have difficulty lifting her arm to put it into the sleeve of a blouse or shirt. One Native Hawaiian survivor shared her strategy. She took an old, extra large T-shirt and cut it open under the sleeves. This allowed her to slip on the t-shirt. Then she used safety pins to close the sides for modesty.

Recognizing when we can be helpful and when we need to encourage independence is a continuum in the balance of care. As caretakers we often try to anticipate the cancer patients needs and do everything for them. The other end of the continuum is not asking them if they need help at all or not thinking they may be needing help.

"There was one time I was going to go for my treatment and I was trying to put on a blouse...it was difficult to move my arm because it was still so sore and swollen from where they have taken out the lymph nodes. I had just gotten on my blouse, and my daughter came running into the room, "Oh Mom, let me help you" and she took it off of me. It was so frustrating, but also so funny. I had worked so hard to get that blouse on and she was so anxious to help me ... and took it off! We all have to laugh at ourselves now and then."
Martha Red Willow - Oglala Sioux 

• Modesty is valued by many Indian people and there may be reluctance in asking for help in personal care. Provide reassurance and encourage your loved one to ask for help.

Della’s Eds. My ceremonial mother had two daughters but she still had a problem with modesty issues and the daughters would close the door for privacy, have a robe or a towel around her and give her the opportunity to dress herself .

My father (also a cancer patient) adhered to our cultural roles of father/daughter relationships and modesty so it took a lot more reassuring for both of us to adapt to a new learning situation. This is also true with mother/son relationships and role expectations in many cultures. The cycle of life of the medicine wheel helped with my learning as well as using it as a tool to help my father understand that this is part of our journey through life and it is okay to reverse our roles of parent and child; care giver and caretaker. Assistance with undressing and dressing for exams at the doctors office, or at home allows your loved one to trust you and to begin transferring that trust to other caretakers. They begin to feel more comfortable about the help they receive with their personal care. Sensitivity and respect is appreciated.

• Keep favorite clothes and accessories of your loved ones included in his/her dress-up list. Ask him/her if they need help to put on their watch, earrings, belt – if it is not uncomfortable to the person. Have special days for assisting with makeup, haircuts and hairdos, and other special care as a pedicure, manicure or a nice massage.
• Personal Care time such bathing, showering, dressing can be followed by a special time for relaxation if one is not going out for an appointment. Many times the personal cleansing experience is vigorous enough for the patient and she may need to simply rest to recovery from bathing.

Paying Bills

"My husband ... took more of ... (the) stress, he took the burdens that I normally would have dealt with; the everyday household things, ... he’d make sure the groceries were taken care of, the bills were taken care of, the kids were taken care of, so you know that I could concentrate of myself .. (He contacted) the insurance company, that was very helpful because when you’re being diagnosed with cancer I found that there were so many things that needed to be done and it was very difficult to do those things myself."
Candi Miller (Haida)

For Cancer Patients who have insurance. The Caretaker may need to advocate on the part of the patient to make certain the insurance is covering all of the bills that it is supposed to. Some insurance companies refuse to pay some bills that are clearly covered in the health insurance policy. You will need to become familiar with the policy and be ready to confront the insurance company of the page and statements that explains the cancer bills are covered. Also confirm the amount of the "deductible" ... some bills will claim that the patient owes more that she should and unless corrected by the insurance company, the patient may overpay her share.

For Cancer patients who are on Disability. Medicare and SSI, and state plans which may be unique to your state may be of assistance with paying the bills. Most hospitals provide staff who have expertise in helping to find appropriate resources to help pay for the medical bills. Call the hospital, request the Medicare or Social Services expert. Find out what type of paperwork s/he needs to have to determine eligibility (e.g., Income tax statement, copy of monthly paycheck, proof of disability paperwork, social security card, birth certificate), collect those items for the cancer patient and meet with the expert to begin the paperwork. At some point the cancer patient will need to review everything for accuracy and sign the paperwork.

Food

• When going through chemotherapy and radiation therapy, many people lose their appetite. Others get sores in their mouths that are painful if eating acidic foods. Others feel nauseous. Others have diarrhea. Others become constipated.
• Some of the recipes and food preparation ideas shared here may address one or more of these side effects.
• Teas for upset stomach -ginger tea
• Traditional treatments for diarrhea (pull out Positively Native)
• No appetite
• Pathways to Wellness (Vera’s book)
• People feel too weak to do grocery shopping, or do shopping for personal items. The caretaker often has the responsibility of shopping for their loved ones. Make a list of needed items including what the personal needs/ wants are from your loved one. Ask family members, friends, and community members to assist you in going shopping for the cancer patient.
• Some grocery stores do phone shopping and delivery for homebound persons so you may want to know what your resources are in your community.

Meal Preparation

• Sharing responsibilities on meal preparation can be a creative experience for the entire family. Have people sign up to prepare an easy, healthy meal for the patient and her family while she is going through cancer treatment. Menu planning and preparation does not need to change drastically but include foods that are essential for your loved one’s health. This would also allow the primary caretaker to not "do it all."
• Cultural expectations concerning food and meal preparation also may bring additional responsibilities for the caretakers during this time in many Indian homes. ( In my Lakota culture we are taught to offer food to those who come to your household and when someone is ill many relatives and friends come to visit.) Some of the relatives who stay may help with the cooking but if there is no one there it is usually another responsibility of the primary caretaker. People will ask how they can help and this may be a good time to say you need someone to coordinate meal planning and preparation for you. A cultural belief and practice of sharing food can be strengthened by expanding new practices that are appropriate: signing up people or groups in the community to prepare meals (including family members) so that sharing is reciprocal.

House Cleaning

• Sign up sheets for house cleaning is encouraged with sharing of tasks. "Task trading" and other arrangements can be explored to accommodate the family composition; i.e. age, and number of people in family.
• If your loved one wishes to be a part of the "task team" ask him/her what they would like to do and ask them if you can assist them.
• People feel weak during treatment and recovery and task inclusion may not be appropriate so awareness of what the person is capable of doing is important.
• If all the tasks do not get done do not get stressed; accept that the house may not be as clean as you would like to have it.

Clothes Shopping

• People may lose weight while going through treatment and their clothes may fit differently. Taking the person to shop or buying them a new item to wear is often appreciated.
• Shopping for personal gifts for your loved one can include special "likes" or "needs" of the person. Gift ideas can include, scented candles, earrings, etc.

Transportation

• Assess and coordinate your available modes of transportation and what your family needs are.
• Continue to keep the transportation schedule available also for the children (baseball practice, etc) and family members that need to keep appointments.
• If other transportation is needed check resources on what is available in your community. Car pooling, public transportation, relatives and friends and cancer information lines are available in some communities.