2017
C.A .R .E.
CANCER AWARENESS RESOURCE & EDUCATION GUIDE
LIVING
with cancer
TOG
ETHE
R • LOV
E • STRENGTH • LIF E
Caring for the Caregiver Family & Friend Dynamics Resources and Supportive Services
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Dear Readers,
Why C.A.R.E.?
Let the testimonies and expert tips help communicate First off, go ahead and take a deep breath... that no matter who you are or what your situation is, Secondly, thank you for opening this guide, because you have support and those who can relate in some cancer can be a pretty overwhelming topic,Kat right?to rewrite form. For, this magazine is about something bigger From the moment that “c” word hits one’s ears, it than ourselves; it’s about each other and a lifestyle may feel like their world is spinning. Well know that that so many endure. This effort would have never C.A.R.E. was made with one main intention – to help been possible without the work of so many: the slow those turns, by letting people know they are NOT collaborating nonprofits, the willing professionals, ALONE. Some of you might have experienced cancer talented designers, helpful volunteers, and supportive yourselves, or know somebody who is affected. Maybe you might even just be aware of the cause. No community partners. The true heroes, however, are those that were willing to share their story for the matter where you lie on this spectrum, this guide is betterment of others. For it is their candid and for you. C.A.R.E hopes to educate the curious, comfort vulnerable contributions who made this resource those battling, while celebrating overall efforts. This possible. May this guide help you find the knowledge, magazine aims to make a caregiver feel relief, a affirmation, confidence, and strength you need to go helpless friend feel more confident, a family member out in this life and give it your best shot. Hopefully you feel more secure and so forth. It strives to put in print, can find power from those who have walked in your the feelings that many might not be able to say out shoes, or solace in a shared struggle - and if nothing loud, or even express a thought you felt you were else let this reinforce that your story, feelings, fears, the only one who had. Now, this won’t replace the thoughts and future are all cared about. This is for advice of anyone’s personal medical team, nor can it those who have been, who are, and those who will be be a complete “manual” to cancer — we understand affected by cancer. Thank you for reading. May you there can be no such thing. With that, though, you are invited to read C.A.R.E. from front to back or simply find strength and comfort in your journey. skip to the sections that suit you best. PRESENTING:
Sincerely, Katty Lopez
PARTNERS:
SUPPORTER:
HELPING HANDS:
-C.A.R.E was written In Loving Memory of Ted S.Lopez-
2017
2017
CC.A R.E.E. . . A.R
CANCER AWARENESS RESOURCE &&EDUCATION GUIDEGUIDE CANCER AWARENESS RESOURCE EDUCATION
MAIN CONTRIBUTORS (in alphabetical order)
PUBLISHED FEBRUARY 26, 2017 Owner Robin Martin
LIVING
LIVING with cancer Publisher withTomcancer Cross
Cover for the Caregiver Caring Elspeth Hilbert
Caring for the Caregiver
ADVERTISING DEPARTMENT Family & Friend Advertising Director Dynamics Bernie Schutz Family & Friend
C.A.R.E. Project Resources Manager & Copywriter Dynamics and Creative & Marketing Manager Supportive Kathryn Lopez
Resources and C.A.R.E.Services Lead Designer Joan Scholl Supportive Senior Designer Services Elspeth Hilbert Layout/Designer Rick Artiaga
Digital Brand Specialist Michael Harrison C.A.R.E. Copyeditor Pat West-Barker ADVERTISING SALES Advertising Manager Wendy Ortega Deb Meyers Chris Alexander Mike Flores Dana Teton Erica Valdez Justin Herrera
TOG
ET
Cancer Society TOG HER • LOVE • ST American RENGTH • LIF E ETHE with Castillo, Communications Manager R • LOCorinne VE • STRENGTH • LIF E
Cancer Foundation for New Mexico with Ronni Levine, LMFT, Support Group Facilitator
Cancer Services of New Mexico with Stephanie Michnovicz, LIPA Program Manager CHRISTUS St. Vincent Holistic Health & Wellness Center staff CHRISTUS St. Vincent Regional Cancer Center staff SOURCES:
American Cancer Society, cancer.org, CHRISTUS St. Vincent Regional Cancer Center, National Cancer Institute, CHRISTUS St. Vincent Marketing Dept., Cancer Foundation for New Mexico, Cancer Services of NM, CHRISTUS St. Vincent Holistic Health & Wellness Center, cancer. PLUS net, nmcancercare.org, New Mexico Cancer Care Alliance, Hereditary Cancer Assessment Program, Balancing NM Department of Health, New Mexico a Career Council on Cancer,National Institutes of Health, Cancer Services of NM/ Hematology Oncology Associates, My Care Plus, testimonies from those Side Effect Management affected by cancer, simplehealth.com, Cooking through Cancer, www. heart.org, cancer.net,Surviving Comfort & Keepers, Presbyterian Medical Services, Thriving Balancing CHRISTUS St. Vincent Sports Medicine, Gloria Media & Supportive Care Career TipsTeam and Testimonies from Those Who KnowaLance at the Presbyterian Cancer Network, Armstrong Foundation, www.theatlantic.com, www.asco.org, A National Action Plan for Cancer Side Effect Management coupons to use locally! Survivorship: Advancing Public Health Strategies, www.pancan. org, www.livestrongcareplan.org, Cancer Services of NM, Jesse and Surviving & Thriving the Santa Fe& New Mexican Society, www.refugeingrief. MacKenzie Provided Allen,byLeukemia Lymphoma www.themighty.com, www.cancersupportnow.org for more Tipscom, and Testimonies from Those Who Know programs and organizations, St. Vincent Hospital Foundation, American Society of Clinical Oncology’s Advanced Cancer Care Planning, NM coupons to use locally! Dental Foundation, caring.com, “Passages in caregiving”, “Things I wish I’d known” by Deborah J. Cornwall, “Caregivers Managing Guilt,” Provided by the SantaNelson, Fe Newauthor Mexican by Vicki Rackner, M.D., Shasta of “Friendships Don’t Just Happen,” and the CEO of GirlFriendCircles.com, “44 Ways to Make the Day of Someone with Cancer” by Alana Miller, Cuddy & McCarthy Law Firm, www.nmcancerhelp.org, www.bewellnm.com, CancerCare Connect.
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careguide.info
2017 2017
C.A .R .E.
CANCER AWARENESS AWARENESS RESOURCE RESOURCE & & EDUCATION EDUCATION GUIDE GUIDE CANCER
Navigating LIFE withis Power a diagnosis Knowledge Informative sections on cancer basics, Caring for the the Caregiver Caring for Caregiver statistics, facts and other information to help you feel empowered.
7 11 13 18 20
Supportive Supportive Cancer 101 Programs Programs Cancer Prevention The Best Protection Family & Friends Family Friends Myths vs. & Facts Dynamics Dynamics Stats and Facts
The Journey Balancing Balancing
From diagnosis, to treatment and side effects Career + who is affected Career + – explore the life of one Cancer by cancer. Cancer
Relationships & Support T
T RR E Neel more confident in your approach to F E N GG T H T H •• L I relationships your life. L I FF EE • Tin • OG
SS
3 WHY C.A.R.E.? Intent and purpose of the C.A.R.E. guide. 6 Letter from the Mayor
TOGETHER • LOVE
HER • LOVE 80 CaringE Tfor the Caregiver 85 Talking with Your Children 88 Viewpoint of Your Child 90 Spousal Relations 93 A Young Diagnosis 95 Family Dynamics 99 Your Extended Family 102 How Do I Be Supportive 107 Focus on Friendship 111 Navigating Grief
Practical Items From employment to advanced directives, take care of business with the help of experts.
115 Cancer Costs 22 Beginning the Journey 120 Cancer + Career 26 Who’s on my Team 124 Handling Health Insurance Local businesses 28 Know Your Options 127 Planning Through the Pain 30 Life with Cancer Surviving & Thriving Surviving 130 Hearing Hospice& Thriving 35 Tackling the Treatment Related CommunityFinancial Financial Resources Resources Side-Effects Local businesses Stay informed on local opportunities and 38 Combat Fatigue and Chemo Brain Side Effect Management Side Effect Management efforts in bringing awareness to the cause. 41 Fueling with Food Tips & & Testimonies Testimonies from those who who have lived it it Tips those have lived 134 from Volunteer for the Cause 45 businesses Cancer: Chapter II Local 136 coupons Save the Date 46 Surviving and Thriving to use locally! 138 Cancer in the Capitol 50 Found in the Fight 139 Findings for the Future Programs & Resources
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52 Reach Out 56 Get Connected 58 Gain Support 62 Programs and Services 66 Palliative Care 68 Therapy for Mind, Body & Soul 72 Self-Care 78 Your Essential Shopping List
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Dear Santa Feans, This month is National Cancer Prevention Month, and I want to thank the Santa Fe New Mexican for putting together this comprehensive Cancer Awareness, Resource and Education Guide – a service to the entire Santa Fe community. This guide is such an important part of raising awareness in our community and putting the resources to support those Santa Feans battling cancer in all of our hands. In these pages you will find information that can be critical to our community’s health, and can connect you to life-saving care essential for preventing cancer, catching it early, and battling it successfully. I like to talk about Santa Fe as a family, because I believe we have the responsibility as a community to look out for one another as we would look out for any other member of our family. That means when one of us is fighting this grave disease, we lift each other up. Almost every family in Santa Fe has a story about how they were personally touched by cancer, and how resources like this one helped connect them to information and to organizations doing hard but important work in standing up to cancer. I also want to thank the organizations who work on the front lines of cancer services and research in this community and across New Mexico: The Cancer Foundation for New Mexico, Cancer Services of New Mexico, and the American Cancer Society for their support. If we’re going to beat the many forms of cancer, both those that are well-known and those that are under-studied, we have to do it together, and this guide helps ensure we all have the information we need at our fingertips. Sincerely, Javier M. Gonzales, Mayor
Cancer 101
The Basics of Cancer
FYI:
The branch of In this day and age, most people can say that they know or have known medicine concerned someone affected by cancer. Although cancer is prominent in society, there still with the diagnosis may be questions about what exactly it is. and treatment of cancer is called oncology.
The more you know about cancer, the less overwhelming a diagnosis may be. Cancer is the umbrella term for a group of more than 100 different diseases. The body is made up of trillions of living cells. Normal cells are generally dominant, growing, reproducing and dying in an orderly way. When abnormal cells — which are always present — begin growing rapidly and invading other, normal cells, the process we call cancer begins. Essentially, cancer occurs when an abnormal type of tissue in your body begins to grow, spread and compete for resources and invades tissue that it shouldn’t. DNA is in every cell and it directs all of a cell’s actions. When DNA in a normal cell is damaged, the cell either repairs the damage or dies. In cancer cells, damaged DNA is not repaired. The cell doesn’t die, but goes on to make new cells that reproduce the same damage. Although DNA damage may result from something obvious, like cigarette smoking or sun exposure, it is rare to know exactly what caused any one person’s cancer. DNA Cancer is always named based on the place where it started. So colon cancer that has spread to the liver is called metastatic colon cancer, not liver cancer. In this case, cancer cells taken from the liver would be the same as those in the colon so they would be treated in the same ways. The same is true for breast cancer that has spread to the bones, for example. It is always called breast cancer. Different types of cancer can behave very differently, so there are different types of treatment for each variation. The cancer care team will discuss the treatment options for each person.
TESTS/IMAGING
Imaging is used to make pictures of internal body structures. Those tests are used to help detect, stage or monitor cancer. The type of scan or test used depends on the type of cancer, area of the body and discretion of the medical onologist/ radiologist.
LAB TESTS- Blood and urine tests can be used to help find some types of cancer. They can also be used to find out how well your body is working. MRI-Uses radio waves and strong magnets instead of x-rays to make detailed pictures of the inside of your body.
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BIOPSY- The doctor takes out a small piece of the lump to check it for cancer cells. There are many PET SCAN- Uses a kind of sugar that can be seen ways to do a biopsy. The type used will depend on inside your body with a special camera. If there is the size of the lump and where it is in your body. cancer present this sugar shows up as “hot spots”. Ultrasound or ultrasonography- A small wand is CT (CAT) SCAN-Uses X-rays to make detailed moved around on your skin. It gives off sound pictures of the inside of your body. waves. The echoes off the tissue are made into a ENDOSCOPY- A thin, lighted tube is put into your picture on a computer screen. body through a small cut in the skin or through a X-ray-A form of radiation that may be used at low natural opening, like your mouth, to look inside. levels to make an image of the body, or at high This enables the doctor to look at the tumor and levels to kill cancer cells. other nearby body parts. C.A.R.E. – 7
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Types of Cancers Carcinomas
Most cancers are carcinomas (i.e. breast, lung, colon). They begin in the lining layer of organs and may invade surrounding tissues, organs and lymph nodes.
Sarcomas
Sarcomas grow from cells in supportive or connective tissue in the body (i.e. bone, joints, fat, nerves, cartilage, deep skin tissues and blood vessels). These account for about one percent of all cancers.
Melanomas
Serious forms of skin cancer that appear on the surface of the skin are called melanoma.
Hematologic (blood) cancers
Hematologic cancers primarily affect blood, bone marrow and lymph nodes, and may or may not create an actual tumor.
Leukemias
Leukemias are immature/ abnormally large cells arising in bone marrow; they block the production of normal white or red blood cells.
FYI:
Every cancer is associated with a ribbon of a certain color – lavender represents ALL types of cancer.
Lymphomas
Most cancers are carcinomas (i.e. breast, lung, colon). Cancers that begin in the lining layer of organs are lymphomas. They can invade surrounding tissues and organs and spread to the lymph nodes.
Myelomas
Abnormal cancerous plasma cells inside bone marrrow are mylomas. They produce too much of the same antibody, which accumulates in the blood and may primarily affect the kidneys.
Cancer Stages “Staging” is an estimate of the extent of the cancer based on physical exam, biopsy results and imaging tests. It’s essential in determining if a cancer has spread and how it will be treated. The “TNM staging system” is used most often and typically based on three key pieces of information: T = main tumor (its size and/or whether it has grown into nearby areas); N = whether the cancer has spread to nearby lymph nodes; M = whether the cancer has metastasized to other organs of the body. Letters and/or numbers after the T, N and M give more details about each of these factors. To make this information clearer, the TNM descriptions can be grouped together into a simpler set of stages, labeled with Roman numerals (usually from I to IV). In general, the lower the number, the less invasive the cancer. A higher number designates a more advanced cancer. Stage 0
i s cancer in which cancerous cells have not invaded neighboring tissue. Some cancers never progress beyond this stage.
Stage I
i s localized cancer, in which a single tumor has crossed the cancerous cells’ membrane.
Stage II Stage III
i s cancer in which the tumor has spread to nearby tissue but has not spread to lymph nodes. i s cancer in which cancer cells have reached nearby lymph nodes and may have traveled into the bloodstream.
Stage IV
i s metastatic cancer, in which the cancer cells have entered the bloodstream and spread to distant organs. C.A.R.E. – 8
Treatment Options
FYI:
Surgery, chemotherapy and radiation are the three main types of A port is central line that cancer treatment. Any of these, alone or in combination, may be the is surgically implanted best treatment for different cancer types. Some chemotheraphy and under the skin of radiation can only be done once. Therapy can either help control the the chest to provide cancer OR cure the cancer. It’s important to know the difference. access to administer IV medications into a is not always the first treatment for removing large vein. cancer from the body. Sometimes only part Surgery of the cancer may be removed. Your specialist will work together with you to personalize the treatment regimen which best suits your diagnosis. Radiation or chemotherapy might be used to shrink the cancer before or after surgery. Chemotherapy
Radiation Therapy Immunotheraphy Hormone Therapy
works to kill cancer cells. Usually the drugs are given intravenously (IV or into a vein) or taken by mouth. Chemo drugs travel throughout the body via the bloodstream. They can reach cancer cells that may have migrated away from the tumor. is treatment with high-energy rays (X-rays) to kill or shrink cancer cells. The radiation may come from outside the body (external) or from radioactive materials placed right into the tumor (internal or implant radiation). External radiation is much like getting an X-ray. It does not physically hurt, but may cause side effects. also known as “biologic therapy,” helps repair or stimulate a person’s own immune system to find and destroy cancer cells the same way it fights off foreign bacteria. is sometimes used to treat certain kinds of prostate and breast cancers.
Treatment option factors: P P P P
Type of cancer P Stage of the cancer Person’s overall health P Likely side effects of the treatment Chance to relieve symptoms or extend life The probability for controlling or curing the cancer
What Cancer Cannot Do
FYI:
Other types of treatments include targeted therapy and stem cell or bone marrow transplant.
Cancer is so limited...
It cannot cripple
LOVE
It cannot destroy
PEACE
It cannot silence
COURAGE
It cannot shatter
It cannot kill
HOPE
FRIENDSHIP It cannot suppress
It cannot steal
FAITH
MEMORIES
ETERNAL LIFE
It cannot corrode
C.A.R.E. – 9
It cannot conquer
It cannot invade the
SOUL
THE
SPIRIT Author Unknown
Common Terms When it comes to cancer, the vocabulary used may seem foriegn. Getting familiar with basic “lingo” can help to prevent even more confusion by allowing a deeper understanding of the concepts related to the disease. ANEMIA A condition that develops when your blood lacks enough healthy red blood cells or hemoglobin. BIOPSY The removal of a piece of tissue from a person’s body so that a doctor can look at it under a microscope to see if cancer is present, and identify where it may have originated. COMPLETE BLOOD COUNT (CBC) A count of the number of cells in a given sample of blood. Red blood cells (hemoglobin, hgb), white blood cells and platelets are most often counted for this lab test. DIAGNOSIS A disease is diagnosed by its signs or symptoms, and by information from imaging tests, lab tests or biopsy. For most types of cancer, a biopsy is needed to be sure of the diagnosis. IMMUNE SYSTEM The complex immune system helps the body resist infection from bacteria or viruses and rejects transplanted tissues or organs. The immune system may also help the body fight some cancers. LESIONION An area of abnormal body tissue, which may be a lump, mass, tumor, spot or change in the way the skin looks or feels.
PHOTOCOAGULATION OR PHOTOABLATION This process uses a laser beam to heat up and kill cancer cells. It is most often used to relieve blockages caused by tumors rather than to cure cancers. PROGNOSIS A prediction of the course of the disease; it also describes the outlook for the chances of survival. RESECTION Surgery to remove part or all of an organ or other structure. TERMINAL Generally understood to mean that the disease cannot be contained or cured. TRANSFUSION Blood or blood products given into a vein (intravenous or IV). Most are taken from unrelated donors and tested for disease before use. People can donate their own blood ahead of time to be given during certain planned surgeries or procedures. TUMOR A tumor is an abnormal lump or collection of cells. Tumors can be benign (noncancerous) or malignant (cancerous). WHITE BLOOD CELLS Blood cells that help defend the body against infections. There are many types of white blood cells. Certain cancer treatments, such as chemotherapy, can reduce their quanitity and make a person more susceptible to infections.
LYMPH NODE A small, bean-shaped collection of immune system tissue found throughout the body. Lymph nodes remove cell waste, germs and other harmful substances from the body. Cancers often spread to nearby lymph nodes before reaching other parts of the body. METASTASIS The process of cancer cells spreading to other parts of the body. NODULE A small, solid lump that can be felt or seen on an imaging test. NEUTROPENIC FEVER Results if the person’s immune system is heavily weakened (white blood cell count is low) and seemingly unable to fight off the fever. C.A.R.E. – 10
For more terms to know visit: www.cancer.org/cancer/cancerglossary/index
Cancer Prevention The Basics of Cancer Wouldn’t it be easy if there were a 100 percent guarantee that “if you do this or don’t do that”cancer could be prevented? Unfortunately, that isn’t the case. However, there ARE healthy lifestyles, appropriate screenings and habits to maintain that can actively minimize your chances of developing cancer or other diseases.
FYI:
No one knows your body better than you do. Listen to what it is telling you.
Stay away from tobacco There is no safe form of tobacco. If you smoke or chew tobacco, stop! Call the American Cancer Society at 1-800-227-2345 for help, or download the free Quit For Life app in Google Play or the iTunes app store.
Limit alcohol Men should have no more than two drinks a day and women should have no more than one drink daily. A drink is 12 ounces of regular beer, 5 ounces of wine or 1.5 ounces of 80-proof distilled spirits.
Reach a healthy weight/eat well Being overweight or obese raises the risk for many types of cancer. Eat fresh fruits, vegetables and minimally processed foods. Save the sugar and high-fat foods for an occasional treat.
Exercise Adults should aim for about 2.5 hours of moderate exercise each week; children should get an hour every day. All ages should get strenuous exercise at least three times a week. Even if you exercise, try to decrease heavy amounts of time sitting during the day.
Be smart with the sun Wear hats, sunglasses, sunblock and protective clothing. Avoid artificial sources of UV light, including tanning booths.
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C.A.R.E. – 11
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CLARITY ON CARCINOGENS:
Substances that can cause cancer are known as carcinogens. Carcinogens do not cause cancer in every case. Substances labeled as carcinogens may have different levels of cancer-causing potential. Some may cause cancer only after prolonged, high levels of exposure. And for any particular person, the risk of developing cancer depends on many factors, including how they are exposed to a carcinogen, the length and intensity of the exposure and the individual’s genetic makeup.
“DOES THIS CAUSE CANCER?” It’s a very important question to ask, but it can be a hard one to answer. Information about what causes cancer can be confusing and isn’t always straightforward. If you find yourself asking this question about something, take these steps: 1. C onsider the source of the information. Is it reliable? 2. C onsider the science behind it. Is it convincing? 3. H ow well does it apply to you? 4. G et more information from trusted sources. What else is known about the subject? 5. Try to put the findings in context. How much does it affect your risk? What can you do to limit your exposure if you feel you need to? Go to www.cancer.org for more information
Barriers to Screening: Avoid the following misperceptions and mindsets: 1) R ationalized Avoidance –“I don’t need to get checked.” 2) N o Symptoms or Family History – “I feel fine and no one in my family has had cancer.” 3) N egative Connotation – “Tests and screenings are invasive, upleasant and will be embarrasing for me.” 4) N o Doctor Recommendation – “My doctor hasn’t said anything, so I’m good.” 5) N o Personal Connection – “I don’t know anyone with cancer, so it’s all irrelevant to me.” 6) L ow Levels of Healthy Behavior – “If I’m going to get cancer, I’m going to get cancer. I don’t need to change my lifestyle to avoid it.” Sources: American Cancer Society, The Centers for Disease Control and Prevention and the members of the National Colorectal Cancer Roundtable (NCCRT) C.A.R.E. – 12
The Best Protection Early Detection Become familiar with your body, acknowledge when it changes and get a checkup. No one knows your body better than you. When cancer is spotted early, the odds are much better for successful treatment, possibly avoiding surgery and keeping it from spreading. That means a much better chance for a cure.
FYI:
No symptom should be overlooked, ignored or put off – especially if it is getting worse or has lasted for a long time.
If you observe ANY kind of abnormality in your body, don’t wait – tackle this potential health problem. Early dectection is crucial.
What Should I Look For?
Cancer causes a wide variety of signs and symptoms, depending on where it is in the body, how large it is and how much it affects different organs and tissues. Cancer is unpredictable. Sometimes signs and symptoms don’t show up until the cancer has spread and is pressing on nearby nerves or organs. If someone notices and remarks on changes in the way you look or act, take it as an expression of concern, and determine if you should get yourself checked out. If you have any of these symptoms, don’t panic – but DO see your doctor or nurse practitioner and ask for a thorough screening.
Potential Signs and Symptons
O Unexplained weight loss of 10 pounds or more O Fever that lasts a long time O Extreme fatigue, weakness or dizzy spells O Unexplained pain anywhere in the body, such as a persistent headache O Nagging cough or hoarseness O Unusual skin changes, such as darkened, yellowish or reddened skin, itching or excessive hair growth
O Recent color/size/shape change of a wart or mole O Red or thickened skin on the breast O Thickening or lump in the breast or other parts of the body O Change in bowel habits or pain while urinating O Indigestion or trouble swallowing O Sores in the mouth or elsewhere that do not heal O Any long-lasting mouth changes, such as white patches or
FYI:
The St. Vincent Hospital Foundation provides free mammograms, biopsies and other diagnostic tests for those who are uninsured and don’t qualify for other assistance programs. Ask your provider to contact Karl Ferguson at 505-913-5209 to arrange for authorization.
white spots on the tongue
O Unusual bleeding or discharge O Blood clots in the veins or legs no K
C.A.R.E. – 13
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Recommended Cancer Screening Tests 20-65 years old
Get annual check-ups that include discussions of tobacco use, sun exposure, diet and nutrition, disease risk factors, sexual practices and any exposure to dangerous substances at work or at home. Find out if you have a high risk of colon cancer because of family history, genetic disorders or other factors. Women ages 40 to 44 can start annual breast cancer screening with mammograms (X-rays of the breast) if they wish to do so. Report any changes in the way your breasts look or feel to a doctor or nurse right away. Find out if you are at higher than average risk for breast cancer. Get a Pap and HPV test done every three years until age 30, then every five years.
40-49 years old
Talk with a doctor about the uncertainties, risks and potential benefits of prostate cancer testing starting at age 45. Men with more than one close relative who has had prostate cancer before age 65 should talk with a doctor about testing starting at age 40. Women ages 45 to 54 should begin having mammograms every year.
50-65+ years old At age 55, talk to a doctor about your smoking history and about a lowdose CT scan to screen for early lung cancer.
Have a colonoscopy starting at age 50 if you’re at high risk and talk with a doctor about testing for prostate cancer if you’re at average risk. Start colon cancer testing at age 50 if you’re at average risk.
HEREDITARY CANCER & GENETIC TESTING
Tests can be done to see if a person has certain gene changes known to increase the risk of cancer or other diseases. Such testing is not recommended for everyone; it is primarily for people with certain types of family history. Genetic risk assessment should be part of the genetic testing process. If you have immediate family members with cancer, genetic testing is an option to explore.
WHAT IS HEREDITARY CANCER?
Hereditary cancer results from changes in genetic information that is passed from parents to their children. Individuals with changes in their genetic information have an increased risk of developing cancer. They may also pass the genetic risk on to their children. Approximately one in every 10 individuals with cancer has an inherited (genetic) form of cancer.
WHO SHOULD BRING UP GENETIC TESTING?
Most recommendations will come from the oncologist, if not addressed by the patient. Many variables are involved as to whether or not it is appropriate for an individual to consider genetic testing. Sources: Hereditary Cancer Assessment Program, UNM CHRISTUS St. Vincent Breast Institute
C.A.R.E. – 14
FYI:
If considering genetic testing, contact your insurance company to see if or how it might be covered.
Recommended Screenings for Specific Cancers: Breast cancer testing
AGE • 40 to 44 should have the choice to start annual breast cancer screening with mammograms (x-rays of the breast) if they wish to do so. • 45 to 54 should get mammograms every year. • 55 and older should switch to mammograms every 2 years, or can continue yearly screening. Screening should continue as long as a woman is in good health and is expected to live 10 more years or longer.
Prostate cancer testing
Men should not be screened unless they have received this information. The discussion about screening should take place at: AGE • 50 for men who are at average risk of prostate cancer and are expected to live at least 10 more years. • 45 for men at high risk of developing prostate cancer. This includes African Americans and men who have a first-degree relative (father, brother, or son) diagnosed with prostate cancer at an early age (younger than age 65). • 40 for men at even higher risk (those with more than one first-degree relative who had prostate cancer at an early age).
Colon and rectal cancer testing
FYI:
Lung cancer sc re Starting at age 50, both men and women should follow is recommende ening those 55 to 74 d for one of these testing plans: age and have years in at Tests that find polyps and cancer: “30 pack year least a the number of” aka if •F lexible sigmoidoscopy every 5 years (if test is positive, a colonoscopy a day multipliepacks should be done) d by th e number of ye • Colonoscopy every 10 years, or th ey’ve been sm ars •D ouble-contrast barium enema every 5 years (if test is positive, a colook eq uals at least 30ing noscopy should be done) . •C T colonography (virtual colonoscopy) every 5 years ( do multiple stool take-home test. If test is positive, a colonoscopy should be done).
SCREENING SPOTLIGHT “80% BY 2018” INITIATIVE
FYI:
In order for New Mexico to do its part in this effort, 214,300 people need to get screened in 2017.
Colorectal cancer is the nation’s second-leading cause of cancer-related deaths in the U.S. when men and women are combined; however, it is one of only a few cancers that can be prevented.Through colorectal cancer screening, doctors can find and remove hidden growths (called “polyps”) in the colon, before they become cancerous. Removing polyps can prevent cancer. “80% by 2018” is a National Colorectal Cancer Roundtable (NCCRT) initiative in which hundreds of organizations have committed to working toward the shared goal of 80% of adults aged 50 and older being regularly screened for colorectal cancer by 2018. If this initiative succeeds, then by 2018, 277,000 cases and 203,000 colorectal cancer deaths would be prevented by 2030! For more information visit www.nccrt.org Source: American Cancer Society
C.A.R.E. – 15
BREAST DENSITY: Determine Your Risk. Understand Your Options. Women with very dense breasts are
4-5
times more likely to develop breast cancer than women with low breast density.
40%
of all women have dense breast tissue
55%
of cancers found with 3D Automated Breast Ultrasound are small and invasive but are detectable before they become life-threatening.
What is a dense breast? Breast tissue is made up of varying mixtures of adipose or fatty tissues, glandular components, lymphatics and blood vessels. Breast tissue is categorized by mammography in four classifications:
Fatty
Scattered Fibroglandular Densities
Heterogeneously Dense
Extremely Dense
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C.A.R.E. – 40
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A case of black and white For women with dense breast tissue, mammograms can be difficult to interpret because their fibrous tissue appears white on the image. Cancerous tumors also appear white, so they become invisible and difficult to differentiate. With 3D Automated Breast Ultrasound, tumors appear dark against the white dense breast tissue. Furthermore, the images generated are available in a video sequence, and not single pictures like a mammogram. This means the video can be stopped, magnified and adjusted to give the radiologist a unique 3D view of the whole breast. On ultrasound, cancers appear dark against the white background of dense breast tissue.
On a mammogram of the same breast, the cancer is not visible against the dense breast tissue.
Are you a candidate? 3D Automated Breast Ultrasound is an adjunctive examination to mammography. It is an FDA-cleared technology and is recommended for women who: • Have a family history of breast cancer or a previous breast biopsy showing pre-cancer or cancer
• Have dense breast tissue • Have breast implants • Have lumpy, or fibrocystic, breasts
If you would like more information about Whole Breast Screening Ultrasound, please visit our website or call us at (505) 983-9350. 1640 Hospital Drive ❘ Santa Fe, NM 87505 Phone: 505.983.9350 ❘ www.santafeimaging.com
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Myths vs. Facts
There are so many preconceived notions about cancer and its effects that they can cloud people’s view of the situation. You shouldn’t believe everything you read or hear. Cancer doesn’t always happen like it does in the movies. Learning the truth about common myths is another form of empowerment. Everyone with cancer has the same experience. Even if two people have the same type, stage and treatment, they will not have the same experience. There are so many variants that determine treatment, care and overall experiences for people. You can’t be around other people when undergoing treatment. Your healthcare team will guide you with regard to infections and discuss potential interactions/exposures. Everyone who gets cancer dies. The most recent available data shows that about 68 percent of people diagnosed with cancer are still alive five years later. Even those who are not cured of cancer, many can go on living for some years, although there will be changes in their lives. For these people, cancer can be a lot like diabetes or heart disease – a chronic illness that’s mostly controlled with treatment. Once people get cancer they automatically go to a hospice facility. Today, families provide about 80 percent of home-care services. When cancer spreads to the bones, it becomes bone cancer. Metasticized cancer in any other location does not change the type of cancer. Breast cancer spread to the lungs is still breast cancer. Cancer causes pain.
C.A.R.E. – 18
Sometimes chemotherapy can cause side effects, the most prominent being fatigue. Cancer can make people feel bad; when the cancer is treated, people can feel better. There are a number of medications and complementary treatments that can help mitigate the side effects of chemotherapy. Everyone with cancer loses their hair. Hair loss is a chemotheraphy related side effect. Many do experience this side effect, but not everyone. Chemo is poison and is only given through infusion. Chemo is not poison and can be given as a capsule as well. Information on the internet is what one should believe. The complexities of the disease and all of the treatment options make it very difficult to use a consumer approach to the information online. Friends/ family who have received treatment in the past may have different experiences and outcomes. Everyone’s caregiver is their spouse. Sometimes children, siblings, parents, neighbors, friends or others will serve as the primary caregiver.
no K
Not always, and not for the same reasons. Some people have pain because of the growth of a tumor or as a result of advanced cancer, while others may have pain from surgery or the side effects of treatment.
Cancer and its treatment will always make you feel sick. You can’t go out in public, exercise or eat what you want. You will vomit a lot too.
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is Power
Treatment is always about curing the cancer.
Massages can spread my cancer to other parts of my body.
Some treatments are not meant to be curative, but rather to control the cancer.
Cancer cannot be spread through massage.
Cancer is contagious.
Sugar causes cancer. All cells need sugar as fuel and there is no evidence that sugar causes cancer cells to grow. A healthy, wellbalanced diet is always recommended, however.
Simply stated: No it’s not. If cancer is stage I or II it’s not a big deal. Just because a person’s cancer case isn’t at an aggressive stage or terminal does not mean it’s not traumatic. If cancer is stage III or IV there is no hope to be cured. Not necessarily. More advanced or metastized cancers are more difficult to cure or contain, but it is not always impossible to be cancer-free after a stage III or IV diagnosis. If I don’t acknowledge that my friend or their loved one has cancer, they will be grateful I didn’t make them think about it.
There are specific stages of grief that everyone goes through when they experience a loss. There are no stages of grief. Grief comes like an uncontrollable wave, sometimes totally engulfing one, other times just as a ripple — and everything in between. The stages people talk about are based on Elisabeth Kubler-Ross’s book on death and dying, but she explained later in her life that everyone experiences grief in their own unique way and that the “stages” were misinterpreted. Counseling is only for those with mental health issues.
You can never “remind” someone of a cancer diagnosis, as it affects them every day. Some people would feel offended if their friend doesn’t acknowledge their diagnosis, while others would be unaffected. There is no one way to act toward a loved one. Everyone has different preferences as to how they will feel supported. Palliative care and hospice are the same thing. Hospice care provides humane and compassionate “comfort care” for people in the last phases of incurable disease. Palliative care, however, is focused on improving the quality of life for those people with serious illness. Palliative care can co-exist with treatment; hospice care cannot.
Seeking counsel from a professional may be necessary to help you or your loved ones navigate through all of the emotions a cancer diagnosis brings. Many use counseling as “therapy” for the mind and spirit, while the medications handle the body. Being strong during cancer means you are always positive and appear unaffected by the diagnosis. “Being strong” is subjective. To some people “being strong” means not to cry/show emotion. To others it means to be organic with feelings. Strength is all relative to the individual. You’re only considered a “survivor” if you are now cancer-free. The American Cancer Society believes that each person has the right to define his or her own experience with cancer and considers a cancer survivor to be anyone who describes himself or herself this way, from diagnosis through the rest of his or her life.
To read more facts vs common myths online from the National Cancer Institute,
C.A.R.E. – 19
visit careguidemyths.info.
STATS & FACTS NEW MEXICO’S NUMBER OF CANCER CASES PROSTATE BREAST (female) LUNG & BRONCHUS PROSTATE (male) COLORECTUM & BRONCHUS MELANOMA OFLUNG THE SKIN COLORECTUM NON-HODGKIN LYMPHOMA MELANOMA OF THE SKIN URINARY BLADDER NON-HODGKIN LYMPHOMA THYROID KIDNEY & RENALURINARY PELVIS BLADDER LEUKEMIA THYROID KIDNEY & RENAL PELVIS PANCREAS ORAL CAVITY & PHARYNXLEUKEMIA LIVER & INTRAHEPATIC BILE DUCTPANCREAS ORALSTOMACH CAVITY & PHARYNX LIVER NERVOUS & INTRAHEPATIC BRAIN & OTHER SYSTEMBILE DUCT MYELOMASTOMACH BRAIN & OTHER NERVOUS SYSTEM ESOPHAGUS LARYNXMYELOMA ESOPHAGUS HODGKIN LYMPHOMA LARYNX 0 HODGKIN LYMPHOMA
30 0
60
90
NUMBER OF CASES
30
60
NUMBER OF CASES
Average annual rate per 100,000, age adjusted to the 2000 US standard population.
130 90
130
TOTAL: 390
Data sources: North American Association of Central Cancer Registries (NAACCR). 2016
CASES OF CANCER* BY GENDER IN NEW MEXICO
INCIDENCES OF DIAGNOSED CANCER BY COUNTY*
47% WOMEN 53% MEN *Including above cancer types + cervix, ovary, testis, uterine corpus * Data provided by the New Mexico Tumor Registry and based on 2014 figures.
All figures based on most recent information of actual counts from the time period 2009-2013. SOURCE: American Cancer Society unless otherwise noted.
STATS & FACTS INCIDENCE RATES FOR SELECTED CANCERS* BY RACE & ETHNICITY 18%
24% NON-HISPANIC BLACK 23% NON-HISPANIC WHITE 20% AMERICAN INDIAN/ALASKA NATIVE 18% HISPANIC 15% ASIAN AND PACIFIC ISLANDER
23%
20%
*INCIDENCE SITES FOR SELECTED CANCERS
24%
• Breast (female) • Colon & Rectum • Kidney & Renal Pelvis • Stomach
15%
• Liver & Intrahepatic Bile Duct • Lung & Bronchus • Prostate • Uterine cervix
TOP 5 LEADING SITES OF CANCER - 2017 ESTIMATES #1 Breast #4 Uterine corpus #2 Lung & Bronchus #5 Thyroid #3 Colon & Rectum
#1 Prostate #4 Urinary bladder #2 Lung & Bronchus #5 Melanoma of the skin #3 Colon & Rectum
PROBABILITY OF DEVELOPING CANCER IN SELECT AGE INTERVAL - 2017 ESTIMATES Birth-49 50-59 60-69 70+ Overall Male 1 in 30 1 in 16 1 in 7 1 in 5 1 in 2 Female 1 in 18 1 in 17 1 in 10 1 in 4 1 in 3 2017 American Cancer Society Surveillance Research.
TOP 10 RANKINGS OF ESTIMATED CANCER INCIDENCES* FOR 2017 #1= MOST CASES
#2
#1 CALIFORNIA
#3
FLORIDA
#4
NEW YORK
#6 PENNYSYLVANIA
#37
TEXAS
#5 #7 ILLINOIS
10,040 CASES
NEW MEXICO OHIO
#8 MICHIGAN
#9 NORTH CAROLINA
#10 NEW JERSEY
*All numbers based on most recent information of actual counts from the time period 2009-2013
TO SEE FULL U.S. MAP WITH ALL RANKINGS, VISIT CAREGUIDE.INFO
FOR MORE FACTS AND STATISTICS, VISIT: CANCER.ORG/RESEARCH/CANCERFACTSSTATISTICS/INDEX
Beginning the Journey The First Steps of the Journey “Cancer.” One word. Yet, a world of impact. You may be able to remember the year, date – even the time the news was given – the news that you or a loved one has cancer. No one can ever prepare to hear those six letters about themselves or a loved one. From that day forward you know your life will never truly be the same. Reactions to hearing a diagnosis vary. Know that there is not a certain way to react to such news – there was and is simply YOUR way.
From Those Who Know! “What I did when I found out I had cancer...” – I held the phone in silence.
– I felt like my body betrayed me.
– I automatically kicked into “survival mode” and made a decision that I was going to fight.
– I wasn’t afraid or angry. I just knew I was in for a rough time and moved toward the goal of beating it.
– I stared at the doctor and said absolutely nothing.
– I asked myself how strong is my faith? How am I going to get through this?
– I don’t remember anything else that was said. – I sat in the parking lot and cried in my car.
– I got mad at everyone, including God. – I said,”Why not me” – realizing cancer doesn’t discriminate.
– I kept it to myself for a while. – I freaked out. – I held my daughter’s hand and we teared up. – I had my husband call everyone... my family/friends. – I called my husband to come and pick me up.
– I was in a fog. – I scheduled surgery for the next day. – I didn’t ask any questions because I didn’t know what to ask.
– I just looked at my daughter and granddaughter and – I dropped whatever was in my hands. didn’t say a word. – I felt like I had a panic attack and collapsed toward – I felt like I was a disappointment to my family. the ground. – I sat quietly in a room thinking about my husband and our two young sons. I couldn’t think or concentrate clearly.
– I thought, “What do I do now?” – I felt like my world fell apart. – I thought, “I’m going to be one of the survivors.”
– I was shocked and in denial. – I felt it was coming...I wasn’t surprised at all. – I made a commitment that it wasn’t going to get the best of me. – I thought, “I can’t have cancer…I’m too busy.” – I was in denial, angry, afraid and suddenly insecure.
– I asked God, “Why? I’ve tried to be a good person.”
To share the story of you or a loved one affected by cancer: visit careguide.info
– I was very afraid of what was ahead of me. – I immediately Googled the statistics. – I just sat there and started crying. – I was very practical.
Th C.A.R.E. – 22
e Jo urney
SCOTT HERBERT, MD MEDICAL ONCOLOGIST A CLOSER LOOK AT MEDICAL ONCOLOGY ON BEGINNING THE JOURNEY: People should really begin with the resources available to them at the cancer center. They sometimes think that all information needs to come from their physician, but that’s just the tip of the iceberg. ON STAGE & PROGNOSIS: These numbers are all averages; some people do worse and some people do better. These numbers NEVER actually reflect the patient that we’re seeing in front of us. Yes, it’s very difficult to let go of the term, Stage IV, but there are so many wonderful things that people
The
Expert is
IN
miss when they focus on the future. That’s another reason to reach out to the social worker, support groups or the patient navigator. People really need help focusing on the present. OVERALL: Eat well, exercise and keep your relationships going. This is really important. Make sure that you keep connecting to people in your life during this process to help you get through it.
SCOTT HERBERT MD
To learn more from & about Dr. Scott Herbert CHRISTUS St.Vincent Regional Cancer Center: visit careguide.info
Now What? Okay, you/your loved one has cancer. You know that asking your doctor questions is an important part of managing your care – but you really might not even be sure what it is that you should asking right now. Your specific questions will be based on your unique situation and they may change over time. QUESTIONS ABOUT YOUR ONCOLOGIST: Are you specialized in my type of cancer? Should I get a referral to someone else? What have been the results for those with a similar diagnosis? Who else should I talk to right now, and in what order of priority? How can I contact you in case of an emergency or if I have further concerns? QUESTIONS ABOUT YOUR DIAGNOSIS: What type of cancer do I have and where is it located? What is the stage of my cancer? What does this mean? What are the symptoms that I may experience from the cancer? QUESTIONS ABOUT SURGERY: (if applicable) Can my tumor be removed through surgery? Why or why not? What are the possible complications of the surgery? What does my recovery look like? QUESTIONS ABOUT TREATMENT: (if applicable) Which treatments, or combination of treatments, do you recommend? Why? Are there any clinical trials available to me at this hospital or others? What are the potential benefits and risks of each of my treatment options? What do each of the medications being prescribed for me do? What type of bloodwork, tests or scans will I need during my treatment? How often? What is the expected timeline for my treatment? How soon will I begin it? Where? QUESTIONS ABOUT SIDE EFFECTS: What are the likely side effects (short-term and long-term) of my treatment options? What medication(s) will be prescribed and do they have their own side effects? How can I keep myself as healthy as possible? C.A.R.E. – 23
FYI:
The inital days and appointments can be the most overwhelming. TAKE SOMEONE WITH YOU to help ask these questions, take notes and get a good grasp on the information. You’re on information overload right now, so an extra set of ears will help you process it all later.
QUESTIONS ABOUT DIET: What lifestyle and diet choices should I begin to make right now? Can you recommend a dietitian or nutritionist for me? QUESTIONS ABOUT SOCIAL CONCERNS: Will my ability to work, travel or drive be affected? Will I need to spend time in the hospital? Will I have physical limitations? What support programs and resources are available for my family and I
From Those Who Know! – Look at all your treatment options, including clinical – Recognize that all can change at a spin of a dime. trials. –N ow, more than ever, surround yourself with positive people. Friends that drain you or don’t lift you, have – Utilize the patient advocate at your cancer center. no place on your journey. – Take a family member or a trusted friend to your – The big picture seems like a huge mountain to appointments & have them take notes. They can climb but small steps forward will make the goal of help explain what’s happening. resuming a normal life a possibly. – See a therapist if you need to or attend a support –H ave faith in your own abilities and those of your group. professional medical team to achieve a future. – Talk to a survivor because he or she will give you – Don’t focus on what you might or might not have hope. done to get cancer. That’s the past. Focus on the – It’s okay to have a pity party….you might even have now. a couple. Now feel free to invite someone or have – Strive for balance. one alone. Just at some point say “ok, party’s over” – Nothing can determine if I’m going to have a good I’m going to deal with it now. day or a bad day…it’s on me. – Talk to a spiritual leader. My priest helped me a lot. – The cancer battle is a marathon, not a 50 yard dash – Numbers are for doctors. Let nothing determine & you have to take it one day at a time, and one if you’re going to have a good day or not, you treatment at a time. determine that. – You can’t always control your feelings, but you can – Can’t get stuck on that numbers wheel-- spinning set a personal goal to manage them in a positive around over prognosis or stage. way. – Take bite-sized tastes of things, tackling things one – Self-determination is key, you must be committed to thing at a time. working to get through this. – Remember that cancer is a word, not a “sentence.” – Acknowledge that your/your loved one’s lives will – Don’t blame yourself for getting cancer – it is what never be the same and move forward as best you it is. can.
C.A.R.E. – 24
Important!
FYI:
QUESTIONS TO ASK YOURSELF AND DISCUSS WITH THOSE YOU TRUST: Does the doctor seem interested in my questions? Is he/she easy to communicate with? Regardless of what they said, am I satisfied with how they answered my questions? Do I trust and feel comfortable with the doctor and his/her recommendations?
Remember to put anyone you want to have access to your medical records on your HIPPA release form.
THE ANNOUNCEMENT AND YOUR PRIVACY You might never become comfortable with uttering or focusing on the words, “I have cancer,” while others will share their diagnosis, test results etc to so many. Neither is better or worse. There is simply YOUR preference. Who you tell and how is often discussed between the patient and caregiver. Sometimes this decision is about what – and for who – you have the mental and physical strength for at the tim. Be sure to vocalize your preferences to others, so that your privacy isn’t unintentionally jeopardized. OPTIONS: Call | Text | Email | Facebook Message | Discuss In person Have someone else do a mass announcement or tell others for you Setting up a Caring Bridge account, email, group messenger etc so that all announcements are in bulk. Overall, tell everybody outside your family. Tell nobody outside your family. Either way, it is your life, your news and so you have the right to approach it in the time and in the manner in which you feel most comfortable.
Who Do I Tell...and HOW? After the initial shock, feelings, or reaction wears off and all of your questions have been answered, It’s important that you determine whom you choose to take on this journey with you, whether it be, what medical team you want or what people in your life to know about your diagnosis, the decision and the timing is entirely up to you.
SPOTLIGHT LAUREN THOMAS
Cancer patients need to arm themselves with questions. Sometimes cancer news is so overwhelming that patients become mentally numb and just don’t know what questions to ask.Your questions are there to open patient/doctor dialogue. As you make that one big leap of faith toward treatment, feeling imformed and comfortable is important!
To read more about Lauren’s journey: visit careguide.info
C.A.R.E. – 25
FYI:
Do not believe everything you read online about your cancer. If you want to supplement your medical team’s information with your own research, ensure that the site is reputtable (see pg 56-57).
WELLNESS TEAM ROSTER We’ve established that your life will never be the same once you learn of a diagnosis. With that, also be aware that there are people who want to support you on this journey. A person’s health is a complicated matter. Adding cancer as a facto r to your care calls for a holistic approach in ensuring you have support for your wide variety of needs. Knowing who is on your “team” is crucial in knowing who to turn to for guidance and answers for questions. PRIMARY CARE PROVIDER I might have been the one to detect your cancer. I help manage other chronic health Photo of: conditions, keep you Angela Teague, MD, up to date on your CHRISTUS St. Vincent Regional Cancer Center health care maintenance and work with you to see who else needs to be involved in your health care team.
RADIATION ONCOLOGIST
I specialize in radiation in the treatment of cancer and work closely with other physicians as Photo of: part of your Donald Shina, MD, CHRISTUS St. Vincent Regional multi-disciplinary medical team. Cancer Center
NURSE PRACTITIONER FOR ONCOLOGY
FYI:
Your oncologist w manage your ca ill ncer, but you also ne ed to get a primary ca re physician to ov ersee your general he alth.
Photo of: Scott Herbert, MD,
CHRISTUS St. Vincent Regional Cancer Center
MEDICAL ONCOLOGIST
I specialize in treating people with cancer. I will be reviewing your scans and making decisions on your treatment/ medications. Many times I specialize in your specific type of cancer. PHARMACIST
I will be called to prepare your medicine for you. Feel free to ask me questions regarding your medication.
ONCOLOGY NURSE
I work directly with your oncologist to ensure all aspects I am a masters or PhD of your care are addressed prepared nurse who is able during treatment. I adminPhoto of: to diagnose and treat you Michelle Stratton, MS, RN, while in all stages of your ister your chemotherapy/raPhoto of: diation therapies integrative/ AGPCNP-BC, cancer journey. The nurse nutritional referrals social Kacie Capps, RN, CHRISTUS St. Vincent CHRISTUS St. Vincent practitioner works with Regional Cancer Center work/program referrals, Regional Cancer Center your physician and their and manage side effects/ care is complementary. Nurse practitioners take symptoms (fatigue, appetite loss) while providing a holistic approach in your treatment. emotional support for you and those around you.
SURGEON
For those who need surgery to remove cancerous cells or areas of the body, I Photo of: consult with you and Anna Voltura, MD am responsible for CHRISTUS St. Vincent Breast your operation. Institute
C.A.R.E. – 26
FYI:
You aren’t ex pect any answers. ed to have That’s what your wellnes s They will alw team is for. ays answer and R help explain, any questions E-ANSWER you continue have to help to you understa nd.
Be Open
WELLNESS TEAM ROSTER PATIENT NAVIGATOR I can talk with you and your ONCOLOGY SOCIAL WORKER/ COUNSELOR
family about your emotional and/or physical needs and can direct you to support Photo of: services and resources that Karen Gano, LCSW best fit your situation. We CHRISTUS St. Vincent focus on how you are Regional Cancer Center feeling, self-care, self-compassion, healthy coping strategies, action planning, problem solving, advocacy, and empowerment.
PALLIATIVE CARE PHYSICIAN
I work with you from your definitive diagnosis of cancer through treatment Photo of: and into survivorship. Beth Carlozzi, PhD, RN, OCN Through coaching and CHRISTUS St. Vincent education, I will help you RegionalCancer Center understand medical problems and treatment options, as well as assist you in making informed decisions on your cancer care.
PALLIATIVE CARE PATIENT NAVIGATOR
I am there to discuss any questions/issues/fears which are affecting the patient’s quality of life. Through Photo of: eastern and western Dr. Douglas Egli, MD CHRISTUS St. Vincent Holistic medicine a palliative care Health & Wellness Center physician focuses on your physical, spiritual and your emotional well-being as you navigate your serious illness.
I will be your “go to” person, answering questions about your care, and helping navigate Photo of: through the health system. Kristin St Clair I’ll support those with CHRISTUS St. Vincent Holistic Health & Wellness Center chronic illness through this challenging time.
I provide treatments that can help patients better tolerate the side effects Photo of: they may experience Doctor of Medicine-CSV while undergoing Eric Ray Buckley DOM cancer therapies; i.e. CHRISTUS St. Vincent Holistic Health & Wellness Center acupuncture, massage.
taste-related treatment and related side effects and help to set up meal plans that are Photo of: Clinical Dietician- Meghan manageable. Boerding MS,RD, LD
NUTRITIONIST/ DOCTOR OF CLINICAL DIETICIAN ORIENTAL MEDICINE I will assist you in your
PHYSICAL, SPEECH & OCCUPATIONAL THERAPISTS
CHRISTUS St. Vincent Regional Cancer Center
MEDICAL ASSISTANT
I am the first person you interact with on visits. Whereas, I am not informed We will work as a part of your about your treatment/ rehabiliation team, if needed. condition- I do check your Photo of: We facilitate exercises to help weight, vital signs, and check Sangita Rai, MA gain more muscle strength, speech development CHRISTUS St. Vincent Regional to see if your medication and cognition in order to help you live a more Cancer Center has changed. I prep you for independent lifestyle. your doctor/nurse practitioner/oncologist.
Photo of: Fr. Adam Lee Ortega y Ortiz, Rector of The Cathedral Basilica of St. Francis of Assisi
RELIGIOUS & SPIRITUAL LEADER I can help you and your family navigate through this journey mentally and emotionally. I may be a chaplain, minister, priest, rabbi, imam, youth group leader or other kind of religious or spiritual care specialist.
Photo of: Rev. Hollis Walker Ordained Interfaith Minister and Cancer Foundation for New Mexico support group faciliator.(photo credit: Peter Ogilvie) C.A.R.E. – 27
Be Open
Know Your Options Upon diagnosis, time flies by so quickly that it may feel like you are going through motions – going from one appointment to the next, meeting one new face after another. Take a step back early in the journey and make a conscious effort to decide the right path for YOU is. How you get through treatment and how you choose to live your life, while also living with cancer, is such an individual path. Talking with your oncologist, making sure you understand the stage of your cancer and being able to ask the uncomfortable questions is important. Doctors are experts in many things and they can offer you advice, but ultimately you have choices about what you do and don’t do. You have the right to say no to any test or treatment at any time.
Seeking Second Opinions
FYI:
At some point during your treatment, you may want to talk with another doctor. Find the confidence to make the decisions you need to for your health. Know that it is common for patients to get a second opinion. Discuss the idea with your oncologist: “Before we start treatment, I’d like to get a second opinion. Will you help me with that?”
Seek the help of a loved one or friend to help you navigate through finding a second opinion and to help relieve some of the stress involved in that process.
“If you had my type of cancer, who would you see for a second opinion?” If this dialogue is uncomfortable for you or you don’t get what you feel you need out of it, find the second opinion on your own. Once you have decided who you will see, ask your doctor’s office for: your medical records, original X-rays and all test results. FYI: You can have records sent or you can retrieve and take them to Anyone who is thinking of the second doctor yourself. It is vital that you get taken care of refusing cancer treatment wherever you feel is best for YOU. Ultimately, it is your health, should talk with their loved your life, so your opinion is what is most important. ly clear to t logis ones and onco understand the likely outcomes Recognize, though, that since cancer of both treatment and nontreatment before making a “doesn’t sleep,” making this decision decision. Just don’t waste time.
is very time sensitive.
“To treat or not to treat”... There are a variety of reasons someone might be reconsidering having treatment, such as: Fear of side effects Financial issues Doubt about the benefit of treatment Hesitance about time commitment The excessive travel involved
C.A.R.E. – 28
Be Open
CLINICAL TRAILS
Clinical trials are research studies aimed at finding ways to improve the diagnoses and treatment of cancer. Clinical trials help us determine whether new treatments are safe and effective and work better than current treatments. They also try to help us better understand the side effects of treatment and how to manage them. If you or a loved one is interested, talk to your doctor. Clinical trials are an option for all stages of cancer. POSITIVE BENEFITS: C v You will have access to a new treatment that is not available outside of a clinical trial. v A member of the research team is by your side throughout the clinical trial, monitoring you closely. v People are living longer from what we’ve learned in past clinical trials. v By taking part in a clinical trial, you add the our knowledge about cancer and help future patients.
POSSIBLE RISKS: D v Extensive eligibility and screening process vPossibility of receiving a placebo v A new treatment may not be better than the standard, or may have more side effects. v Some studies may require extra visits or tests.
There are currently open trials for breast, prostate, lung and pancreatic cancers and for melanoma at CHRISTUS St. Vincent Regional Cancer Center. CONTACT: Research Department CHRISTUS St. Vincent Regional Cancer Center | 505.913.8903 The Cancer Center is continually reviewing the list of available trials in order to best serve the community, so inquire with a member of the research team for the most current opportunities. COMING: Website at www.stvin.org–Spring 2017!
OLIVIA SLOAN, RN/MPH, CLINICAL RESEARCH
The
Expert is
A CLOSER LOOK AT ORIENTAL MEDICINE CLINICAL TRIALS always include a standard of care approach. Beyond the standard care clinical trial patients receive, they are also supported by a specialized research nurse who serves as a patient advocate, ensuring that the patient and study needs are met. Contact CHRISTUS St.Vincent Regional Cancer Center: 505-913-8903
C.A.R.E. – 29
IN
Life with Cancer
Cancer is a lot of appointments, uncertainty, managing side effects and newfound challenges. There are ups, and there are downs. The changes that you and your loved ones may experience are some of the largest aspects of cancer to navigate through.
Introducing the “New Normal” Cancer may result in: vAltered routines vChanged roles and duties in your family vStrained or strengthened relationships vChallenges in dealing with money and insurance vThe need for help with daily activities
FYI:
Every hour you may feel different. Take advantage of the times your energy level is manageable by doing something YOU enjoy...whatever that may be!
Even through the day-to-day logistics and appointments, many people are still able to lead full lives. QUALITY OF LIFE = OVERALL ENJOYMENT OF LIFE, which includes yoursense of well-being and ability to do the things you find important. Even though cancer alters much in your life, know that you have the power to create a new, more intentional version of your life. You can still do things you enjoyed before cancer, aka “BC”– although they might just look a little different. In the midst of this new normal, there are ways to reduce stress, many of which offer the chance to spend quality time with those you care about or do some of the things you’ve always wanted to do, such as:
“Creating Highlights” vs “Making Memories Memories are experiences we have and recollect at a later date. HIGHLIGHTS, however. are fond memories that stand out among the rest, bringing so much joy that you want to recall them in the future! Cancer and other physical factors may undoubtedly affect the activities one is able to partake, but much can still be done:
From Those Who Know!
Listen to music Binge-watch positive TV programs & movies Read books and magazines that interest you Take up a creative outlet, such as crafts or music Start a new physical activity (with permission from your medical team) Watch fun or uplifting videos and movies online, or catch up on sports or news Write your thoughts in a journal or keep a memory book to log good times Pray, meditate or catch up with old friends Take walks Play with pets Cook Scrapbook Play card or board game
Visit Pandora.com to create a *free* custom music station! C.A.R.E. – 30
Liv
e on ...
Controlling the Loss of Control Those living with cancer and their caregivers oftentimes feel a powerlessness over what is so directly impacting them. It can feel like some invisible force is running things that affect your lives so directly. For many, the most difficult but most important thing they can do is — to the extent that it’s possible—stop taking care of others and be okay with relinquishing control.
FYI:
You won’t always be able to control your feelings, but you can set a personal goal to manage them in a more postitive or healthy way.
Balancing Physical, Emotional & Mental Health Allow yourself to feel the spectrum of emotions that naturally come with this condition’s bumpy ride. Remember there is NO right or wrong way to feel or behave. Don’t judge yourself for your feelings. It’s okay to NOT be okay all the time. Some people pretend to be cheerful when they aren’t. Some people want to show the world they can handle cancer on their own. There is nothing wrong with what you present to others, as long as that persona does not prevent you from getting the help that may be needed. Try to be honest and talk about all of your feelings, not just the positive ones. Don’t be afraid to tell people what you need from them and what type of response is helpful to you (see pg 102106). Every emotion is a normal one. Denial, anger, fear, stress and anxiety, depression, sadness, guilt and loneliness are all feelings that can go hand-in-hand with a cancer diagnosis. Feelings of hope, gratitude and optimism can also result. Truth be told, ALL of these feelings can come and go, sometimes even all in one single day. A collaborative dialogue with the oncologist and other medical professionals, support from family and friends and attending support groups both for the caregiver and patient is an important way to figure out how you are feeling. The strategy in which one “plays the cards they’ve been dealt” is a very personal and different one for everyone.
SPOTLIGHT ANNETTE This is definitely a journey that I wouldn’t want anyone to go through. It’s important for all of us to not blame ourselves for our cancer. We should work on letting go of the things and feelings that increase our anxiety. Having cancer can be a very isolating, yet exhausting disease. I’ve had four to five calls with physicians just today...I just have so many doctors nowadays. For me, what it has really boiled down to is trusting my gut. For me, I trusted my dog too, as he is who started to act differently upon me initially getting diagnosed – he knew. Overall, I’ve learned that you have to be determined in being your own advocate at times, and should never feel bullied in the process.This disease takes energy – and so you have to be a fighter. All you can do is be strong – and hope that people will cheer you on and prop you up, like an athlete.
C.A.R.E. – 31
From Those Who Know! – Don’t Google anything! You want credible information? Talk to your doctor. – I truly believe being as positive as you can and having a strong faith kept me going through some very strong treatments. – Your frame of mind needs to change. Don’t do stuff because you have to – do it because you can do SOMETHING. – Don’t compare stories with others. Use other people for bonding but NOT for medical advice. Bond but don’t compare what they are taking/ going through vs. you. Every case is specific and catered to each individual. Comparing will hinder energy level. – Hang around happy people and keep to your regular daily schedule as much as possible. Don’t give up the fun activities! – Prayer above all else. I prayed a lot! Especially during the times when I didn’t have the energy to do anything but lie in bed. – I also have a little book of prayers and I had special prayers I said every day, which brought me comfort. – Let go and let God! – Keep fighting. – People aren’t mind readers. You have to tell people what you need. – What they feel is okay ..everyone goes through it a different way. Pray, meditate, seize the day with whatever enthusiasm you have – it’s okay. – Learn about your disease. You need to go take those tests and do the things. You need to be your own advocate. – Celebrate triumphs, no matter how small they may seem. Find any excuse to reward yourself with anything that will make your life better. – Make conscious choices about how you spend your time and whom you spend it with. – Continue to fight and focus on living. – It’s okay to get rid of all materialistic things. – Sometimes with cancer you just have to go with it…for your quality of life. – Get yourself out of bed. Whether you are feeling good or not...move. I think it’s important for your mental and physical health to get up and move around if you can. – Give yourself pep talks if you need to. – Know your limitations. So what if you have to walk instead of running, just do things you enjoy. – There is a person out there who will help you, so take someone to your appointments.
– Be okay to accept help!!! It makes others feel useful and it relieves stress on you. Someone wants to bring dinner or clean your house…LET THEM! – S taying positive number one, definitely support from family and friends was a strong second and knowing you’re not the only one going through this. – Don’t lose hope and find blessings in your daily life. – Surround yourself with positive people. –R egardless of if you are feeling bad, enjoy the fact that you still can shower. – E ven if you are feeling crummy, get up and do the things you still enjoy. – Do your best not to dwell on your illness. – D on’t be afraid to accept help. People will be coming out of the woodwork to raise money for you, to bring gifts, food, etc. Let them. They WANT to help and it makes them feel good and at the end of the day, you will need all the help you can get! Put your pride away. – Don’t lose hope. – S ometimes emailing or texting about your feelings is easier than talking face to face. – You’re going through enough, don’t worry about entertaining others. It’s not your job. – Take the moment as it is. All we have is the moment. Keep your faith. Don’t give up. – S tay positive, make the best of it and above all else, thank your doctors and nurses every time you see them and treat them with respect. – Accept life with it, and how to manage day by day – F ear is always ther, it’s just a matter of dealing with thing in better ways for better days – Go to counseling – Talk to others in your position – Be positive –C ontinue your normal routine to the best of your ability – Get out of the house – Exercise – DONT ISOLATE YOURSELF – Trust yourself een in a journey that is uncertain. –G ive yourself the ability to say “I’m not going to deal with this/think about my cancer until Monday” – Be gentle with yourself. –N o one says you have to be in a good mood– but keep living – Do something you enjoy!
C.A.R.E. – 32
To share your tips with others: visit careguide.info
SPOTLIGHT
SCOTT SEALY FRIENDSHIPS Finding out that you have My friendships are stronger than ever. My cancer is never easy, for friends have been friends with my wife and anyone. I was 26, and was I since we stated dating, which is nice. A just married – when in 2015, few friends came to be with her while I was I suffered a major seizure initially in a coma. at work. Days later I was diagnosed with Grade 2 GRATITUDE Astrocytoma Brain Cancer. I To my friends, I don’t think there is enough feel as though I am just now words to tell them thank you for everything getting my thought process back. Like any that you and your families did to help us. other illness, especially one so drastic and You are truly my family and I could never say sudden, I have my good days and my bad ones. thank you enough, but THANK YOU! Currently, I just focus on looking ahead and getting better. To read more online about Scott’s journey: visit careguide.info
Getting “Taken Care Of” The person with cancer will do whatever he or she can to make sure that OTHERS are comfortable or taken care of. Keeping one’s autonomy while embracing the help of a caregiver and others is another concept that calls for balance. Ultimately, communicate your wishes and preferences, but most importantly BE PATIENT WITH YOURSELF as you try to figure all of that and so much more out. You aren’t expected to know how to be or “what you’ll need during cancer.” Simply give it your best shot to determine this so that you can focus on being as healthy as possible and making the HIGHLIGHTS for your life that you deserve.
C.A.R.E. – 33
MICHELLE DALY, MSPH, MA, LPCC, ATR, IMH-E®
The
Living with Cancer Support Group Facilitator, Certified Sensorimotor Psychotherapist
Expert is
IN
What an honor to be able to facilitate the Living with Cancer group for people who are faced with recurrent and metastatic cancer. This group offers an opportunity for participants to share their stories and to be deeply witnessed in their sharing. This is what I have noticed that group members have brought into group - hopes and dreams of appreciation and acceptance, recommitting to living and discernment about how to live and attain the best quality of life possible. Themes that we discuss in the group include (and are certainly not limited to) quality of life, treatment choices, capacity to receive, self care, changing lifestyle, grief and loss (grieving their own healthy selves, loss of some friends or family members, loss of hair and loss of functionality or body parts), choice (of treatment, what to do next, connecting with others or resting), how cancer affects the family, and much more.
LIVING WITH CANCER SUPPORT GROUP Wednesdays from 1:15 - 2:30 p.m. The Cancer Foundation for New Mexico offices 3005 S. St. Francis Dr., Ste. 3-B, Santa Fe
To read more online about the Living With Cancer Support Group visit careguide.info People Living with Chronic Illness Support Group Meetings are on the second and fourth Tuesdays from 2– 3 p.m. The group is sponsored by Comfort Keepers Contact: Eileen Joyce 505-428-0670, or eileenjoyce@comfortkeepers.com, to reserve your place and get directions to the Santa Fe location * FREE*
From Those Who Know! – Appreciate the journey. So often we push towards that magical “remission” word we forget the battle that it is to get there. Love your body for fighting. Love your people for being there. Embrace the fact that this isn’t what you planned, but if you can try to find something or someone new to embrace every day, it might just make the rollercoaster a little more manageable. – My faith helped me get through (after I had my pity party). – Be strong and believe that you can get through their tough times. – Accept life with cancer in it, and how to manage day-by-day. – Staying positive helped me, for my peace of mind. – Fear is always there; it’s just a matter of dealing with things in better ways for better days. – I felt guilty because my journey felt easier than others. And because no one in the outside world no one could tell I had cancer I felt grateful, but guilty at the same time. – For someone who used to be incredibly fit and active, it’s tough to stay positive.
C.A.R.E. – 34
Tackling TreatmentRelated Side Effects
Cancer treatment strives to destroy the harmful cells in your body. Although its intent is good, in trying to eliminate or control the cancer, it can result in some very not-so-good feelings. These are known as side effects. Side effects can be a result of: Cancer | Surgery | Chemotherapy | Radiation | or any other type of therapy you undergo
Most Common Side Effects RADIATION – fatigue and skin irritation in the local area of treatment CHEMOTHERAPHY (“chemo”) – can damage the blood-making cells in the bone marrow; patients may have low blood cell counts. LOW BLOOD CELL COUNTS may lead to: vHigher risk of infection (from a shortage of white blood cells) v Bleeding or bruising after minor cuts or injuries (from a shortage of blood platelets) v Anemia (from low red blood cell counts), which can cause tiredness, shortness of breath, pale skin and other symptoms
FYI:
Treatment affects every person differently. You are not expected to just suffer through the side effects. Be honest about how you feel to your medical team and caregiver; as most side effects can be managed or remedied in some way.
AVOID INFECTION BY: Washing your hands often: before you cook/eat, after restroom use, after being in a public place. Brushing your teeth two times a day with a very soft toothbrush Staying away from those who are sick Washing raw fruits and vegetables very well Cooking meat well Staying away from those with recent vaccinations Avoiding pet-related clean ups Trying to avoid cuts Not squeezing pimples Keeping area around catheter clean and dry (if applicable) Cleaning yourself thoroughly after restroom use Removing banages after a blood/port draw
FOR... • Seizure • Chest Pain or pressure • Y ou can’t talk and breathe at the same time
• Large amount of blood in vomit or stool • Fainting or loss of consciousness C.A.R.E. – 35
Th
e Jo urney
IF YOU HAVE:
A. Loss of Hair
B. Chemo Brain
C. Insomnia
F. Mouth Sores/Dry Mouth
E. Nausea & Vomiting
D. Decreased Muscle strength and/ or Motor Skills
I. Skin Irritation/Rash H. Digestive Distress
G. Loss of Appetite
K. Sexual Dysfunction
L. Infertility
J. Neuropathy (Numb Hands/Feet)
M. Effect on the Bones O. Anxiety & Depression and P. Overall Fatigue
N. Edema (Swollen Feet and Hands)
TRY THIS: A.
Wigs, hats, scarves, beanies, maintaining a short style haircut (see pgs 72-74).
I.
Use mild unscented soaps, avoid sun exposure and keep skin moisturized.
B.
Write things down. Ask for assistance. Be patient with yourself and take things slow (see pgs 38-40).
J.
Avoid contact with hot water and unnecessary friction. Use gentle moisturizers, elevate hands/feet, and apply cool compresses.
C.
Avoid caffeine, alcohol, and tobacco. Exercise, start a bedtime routine (reading from a book), and set daytime sleep restrictions.
K.
Talk with doctor about safe medications to help increase sexual desire.
D. Exercise the body and the mind (mind strengthening activities).
L.
Talk with doctor to learn options.
E.
A bland diet, small frequent meals, Compazine pills, Ativan—or ask your doctor abiout Zofran/Emend.
M. Eat or drink calcium-rich foods, slight exercise and ask doctor for medications.
F.
Rinse mouth frequently (1 cup water, 1 tsp baking soda and/or 1 tsp salt to PREVENT sores), drink lots of water. Avoid alcohol, caffeine, hot food/drink, and acidic foods & juices. Brush teeth two to four times a day.
N.
G.
Control other side effects that contribute O. Try to recognize fear and specific cause, talk with to poor eating. Eat small frequent meals, your doctor and practice relaxation. stay hydrated, and get creative with your diet if you need to (see pgs 41-44).
H. Drink water. Avoid dehydration, caffeine, alcohol fatty/acidic foods. Eat more fiber, take antidiarrheal/laxative medicines (Imodium A-D or Senokot S, depending on distress).
P.
Reduce salt. Wear compression devices, take diuretics, exercise and elevate affected area.
Speak with a social worker or patient navigator to address your feelings of anxiety or depression. Try exercising 15-30 minutes a day for fatigue (see pgs 38-40).
When side effects from treatment or medication are experienced, try to tackle them right away by using the resources you received at orientation and information available – then work with the triage nurses, who are certified and willing to help you over the phone.
PATIENTS: WHEN SHOULD I CALL THE OFFICE? Call if you have ANY of these signs of infection: -Fever over 100.5 or if it is lower and you feel really bad -Cold/shaking chills (even without a fever) -Productive cough -Any cut or wound that is red, has drainage or pain -Pain or burning where you urinate -UNUSUAL brusing or bleeding
LYMPHEDEMA
Lymphedema is a common, yet under-diagnosed condition that could occur in anyone; especially after cancer treatment, injury, surgery or other trauma.The current treatment for lymphatic disorders is very successful; it consists of manual lymphatic drainage, compression, skin care and education.
HOW TO KNOW IF YOU NEED TO TALK TO A LYMPHATIC THERAPIST:
1. I f you have had lymph nodes removed in any part of the body; radiation or injury to any lymph nodes 2. I f you have evident fluid accumulation or a feeling of “fullness” or heaviness in the area 3. I f you have lost motion, strength, function or have pain as a result of cancer treatment or trauma to the lymphatic system
CLINICAL SUPERVISOR DEANA BENJAMIN, MS PT, CLT
Report serious symptoms: Mon-Fri, 8am-5pm Nurse Triage 505-913-8919 Evenings and Weekends: Doctor on call 505-913-8900
4. If you plan to fly and have had lymph nodes removed or damaged. A compression garment is advised to reduce the risk of developing lymphedema 5. If you have had a severe injury or surgery and have chronic swelling past the expected time for this to resolve.
IF YOU ARE IN DOUBT...ASK FOR AN EVALUATION TO GET YOUR CONCERNS ADDRESSED!
LUNCH & LEARN: Lymphedema Education Every fourth Wednesday of the month 12-1p.m. CHRISTUS St.Vincent Holistic Health & Wellness Center | 490 B West Zia RD., Suite 4, Santa Fe REGISTRATION REQUIRED: Call (505) 913-3820 to reserve your spot
The
CHRISTUS ST.VINCENT SPORTS MEDICINE
Expert is
IN
“If you have un-resolved swelling of any type, please speak to your Doctor about seeing a Lymphatic Therapist. We recommend that anyone with lymphedema or lymph node removal wears appropriate compression when traveling by air.” For more information to reduce your risk of lymphedema following cancer treatment, visit www.lymphnet.org C.A.R.E. – 37
Fight Fatigue & Chemo Brain Fatigue is one of the most common and distressing side effects of cancer and its treatment. A condition called, “chemo brain” is part of the fatigue. It is a mild but very real decrease in mental functioning. How you are affected will depend on your age, stress levels, blood counts, general health and the other medications you are taking, among other factors.
For h Energy and i Chemo Brain... PWrite things down and prioritize your lists. P Reduce work time if you have to (if applicable). P Exercise your brain, do word puzzles, learn something new. P Get plenty of rest, including at least eight hours a night, plus naps. P Drink eight cups of water each day and have five or six small meals or snacks.
FYI:
P Maintain a healthy diet (see pgs 41-44) P Consider relaxation techniques such as meditation. PTry to keep a regular schedule – routine helps. PLet others help you.
Lightly excercising for 15-30 minutes will actually help with fatigue.
Common Signs of Chemo Brain Include: vShort-term memory lapse vTrouble concentrating, focusing or processing v Short attention span vTrouble multitasking v Trouble remembering certain words, names or finishing sentences. Be honest about your fatigue. Know that there will be activities that will take more out of you than they used to. It’s normal to get frustrated with that. Be patient with yourself and always let someone know if you need to leave some place or simply slow down. Give yourself permission to focus on one thing at a time. Your body is going through a lot, and fatigue isn’t your fault. oth overall fatigue and chemo brain can change throughout treatment – and remain even after, B with good days alternating with bad days. This is normal and expected.
PAIN MANAGEMENT
Pain isn’t an inevitable part of cancer, but it is a real possibility. Remember — All pain can be treated and most pain can be controlled or relieved. Talk to your doctor about the possibility of pain and about available medicines so you can plan ahead. I t’s easier to control pain right when it starts rather than waiting until it becomes severe. There’s no need to “tough it out.” Discuss with your doctor, nurse or pharmacist about how to manage “as needed” dosages and any concerns you have about side effects and the possibilities of becoming dependent on pain medication. Keep track of your pain, using the commonly used “pain scale”
of 1 to 10. This is what doctors and nurses are most familiar with, so this will help them know how best to assist you. Be specific about where it hurts and how much it hurts from 1(not much at all) to 10 (extreme pain).
Th C.A.R.E. – 38
e Jo urney
There are a lot of names, dates and details to remember when you’re navigating cancer treatment. GET A NOTEBOOK to record current medications, jot down reminders, note how you feel and write down questions for the medical professional you will see. THEN TAKE IT TO EVERY APPOINTMENT.
REMINDERS: al team... R Names of my medic rses in the nu the of s me he na RT ... chemo room dications... R I’m taking these me s needed” “a R I take this for... or s/ rie ge sur ates of all RD ER visits... hospitalizations or ... WHEN I NEED TO atment, tre ule chedule or resched RS l... I’ll cal ion, I’ll call... heck on a prescript RC had... e I’v ns ist of the sca RL Date(s) ... ents on ’ve had chemo treatm R I these dates... or details I ther names, dates lude... RO inc r be need to remem
the • Download PP” A or it on M “Pill rs to get reminde ke ta to n he of w medication. all • Ensure that are important #s d ve sa d an named ur in your and yo e on ph r’s ve caregi
What to Expect from Your Treatment Sessions WITH RADIATION:
• All participants wear robes and are in a co-ed waiting room (without caregivers or guests). • Treatments are given Monday through Friday (five days a week). • One “round” can be anywhere from two to seven weeks (depending on the type and stage of radiation).
IN THE CHEMOTHERAPY ROOM:
• You’ll be resting in a reclining chair while you receive treatment. • You can sleep, read, play games, write, use your laptop or do quiet activities that help you relax. • You can ask a friend to visit or stay with you the entire time. • One oncology nurse will administer your treatment and discuss any questions or concerns you may have.
SOME THINGS TO BRING TO THE CHEMOTHERAPY ROOM:
FYI:
The CHRISTUS St. Vincent Regional Cancer Center provides pillows, warm blankets, free wi-fi and nutritious snacks for those undergoing treatment and their families.
laptop notes/phone/ tablet
reading material
headphones
favorite pillow and blanket
or anything that will either help you feel productive or relaxed during that time games to play with notebook and pen to write down family/friends thoughts to relay to your medical team C.A.R.E. – 39
Help Your Oncology Nurses By: PFilling all prescriptions prior to your first day of chemo. P Bringing your medications to all appointments (or a list with name, dose, expiration, and refills allowed). P Remembering to ask for prescription refills while you are in your office visit with the oncologist/nurse practitioner. P Telling them your side effects – they can only help you if they know what you are experiencing. PUtilizing the nurse triage or doctor on call at night/weekends/ holiday if you felt sick–had a fever in between visits.
FYI:
If you feel up to it, try doing something else on your treatment days – have a movie night, listen to your favorite songs. treat yourself to a favorite meal/restaurant, hang out with a friend/family member – allow yourself to do something you enjoy on treatment days.
Nurse Triage: 505-913-8919 Evenings and Weekends: Doctor on call 505-913-8900 Doing those small things can help your oncology nurses help YOU better. Talk to them and express your concerns, needs, and fears. They are huge resources and members of your team during this journey.
SPOTLIGHT CHRISTA WOODS, RN | ONCOLOGY NURSE
When I was 24, my brother Jason died of leukemia. He was 26 years old and I cared for him while he was treated at John’s Hopkins. Jason would always tell me, “Chris, you should do this. They [oncology nurses] have such a cool job!” I always remembered him saying this. I, too, believed it was so “cool” and that the kind of work they did was so important. Aside from my education and advanced skills/oncology certifications, I try to offer something extra to patients and their families. I can offer personal experience. For I know what it is like to sit in that chair by your family member. I know what it feels like to hear the words, “there are no more treatment options at this point,” “your cancer is terminal” or “you have so many months to live.” I really understand what those that may happen to hear this and their loved ones are going through. Truly, I’ve been there. I have been in oncology for eight years, and I’ve found the most grateful and respectful population of patients I have ever worked with are here at CHRISTUS St. Vincent Regional Cancer Center. I enjoy interacting with such a special group of people. I have never felt such gratitude and respect when caring for other types of patients. They are so thankful and they teach me so much about life. I have cried with patients, I have cried with their families, I have grieved with them and for them. I held their hands, I have visited their homes, I have told them I love them, I have opened my heart to so many and certain patients have taken a piece of it with them when they died. I understand their journey and how important it is for them. If I can pass along the message to those I care for that to never forget how important their quality of life is, then I’ve done my job. I feel like if this is something you have to go through, I like being the one that can help you through it, make it more pleasant, less scary, maybe even laugh and ensure you feel well taken care of with available resources. You are not alone, and we all really care about you. This is SO much more than a job. I LOVE THIS WORK!
TO LEARN MORE ONLINE FROM AND ABOUT CHRISTA: visit careguide.info C.A.R.E. – 40
Fueling with Food One common side effect of treatment is a change in appetite. Things just might not taste “right” to you. Don’t be too hard on yourself if you can’t eat what you used to. Chemotherapy DOES oftentimes make food taste different. Experiment with your foods and talk it over with your medical team. Eating the right kinds of food can make a big difference in how you feel. Nutrition is an important part of navigating through cancer and you might need to improve your diet to help build up your strength and withstand the side effects. Protein such as dairy, fish, poultry, lean red meat, eggs, peas and lentils helps heal tissues and fight infection.
Vegetables are carbs and should fill half your plate. Select Whole Grains for good health.
Fats in avocados, peanut butter, nuts and seeds, fatty fish such as salmon, olive oil, tofu and soybeans help store energy, insulate body tissues and transport some types of vitamins through the blood.
Carbohydrates such as fruits, vegetables and whole grain pasta, quinoa, breads and cereals give the body the fuel it needs for physical activity and proper organ function.
Fresh fruits are carbs and should be included in meal planning.
Dairy can include low-fat milk and cheese.
CALORIES = ENERGY
FYI:
To maintain energy, eat high-calorie snacks every few hours (peanuts, cheeseballs) and don’t wait until you feel hungry or for meal time. A short walk after you eat will help your digestion and give you more energy.
PROTEIN = REPAIR DAMAGED CELLS OVERWHELMED BY THE FOOD? Use smaller plates. A large plate, full of food, may seem like too much, especially if you are tired. THINGS TASTEFOREIGN/METALLIC? Eat with plastic or wooden utensils. Also try to avoid aluminum containers or canned food. WANT MORE FLAVOR? Try adding a squeeze of lemon or lime, adding additional spice or herbs or increasing the sweetness of foods.
C.A.R.E. – 41
What’s on the menu? Create a realistic yet nutritious daily meal plan for yourself: BREAKFAST Low-fat yogurt or cereal with fat-free milk, or whipped cream on a waffle
SNACK Cup of pudding, some gelatin or a piece of fresh fruit
LUNCH Egg salad sandwich, avocado, macaroni and cheese or a hearty soup
SNACK Small bag of trail mix, crackers, piece of bread with peanut butter
DINNER Baked fish, lean red meat, baked potato with butter, peas or a casserole or stew
MEGHAN BOERDING MS, RD, LD
Staying hydrated is important for your body’s organ function and body cells. Strive for at least eight glasses of fluid each day. That doesn’t always mean water is ALL you can drink.
Try these hydrating alternatives: Caffeine-free iced tea/soda Ginger ale Ice pops | Gatorade Herbal tea | Jello Soup broth | Decaffeinated coffee Pepperment tea | V8 Juice Water with: lemon, lime, berries, mint, watermelon, etc.
The
Expert is
IN
Follow a healthy diet high in protein with plenty of fruits, vegetables and healthy fats for as long as you can while on treatment. With this in mind, weight loss can be far more dangerous to outcome than just eating to maintain weight, even if the choices do not always seem “healthy.” A lot of people come in wanting advice on what seems to be following some extreme diet. They are often surprised when they are recommended to follow a basic one. Overall, everyone is different, and changes in taste may effect each patient differently.
ATTENTION: All Cooks
Try preparing multiple meal options, just in case one doesn’t taste right to your loved one. DO NOT TAKE IT PERSONALLY if you serve them something they can’t eat. Eating during treatment is a trial and error practice for everyone involved. If your loved one has a preference of brand for any product – regardless of whether or not you believe there’s a difference. Always honor those wishes by using the brand of their choice and simply encourage them to eat as best they can. Don’t challenge them on what they feel tastes best to them! C.A.R.E. – 42
To Remedy Certain Side Effects of Treatment: Mouth Sores
If mouth sores make it hard to eat solid or acidic foods, try smoothies made with ice cream, protein powder and fruits such as bananas.
Low Blood Cell Count
If your immune system (white blood cell count) is down, be extra careful about cooking food thoroughly and making sure the kitchen is sanitary.
Weight Changes
Although small weight changes are normal, do your best to stay at a healthy weight. To avoid excessive weight GAIN – stay physically active. To avoid/excesseive weight LOSS – try adding Ensure to milkshakes
Sweet Tooth?
Have a sweet tooth? Add jelly and honey to breads and crackers, jam on fruit, or ice cream as a topping on cakes.
Dental Health
Visit a dentist to check your mouth’s health prior to treatment, as well as after, in case there are any changes in your teeth.
Joy of Eating
Try not to confuse the joy of eating with nourishment. Make sure you are eating delicious, balanced meals with just the occasional indulgent treat.
Nausea
Try ginger tea, or have more frequent meals (five to six a day).
TRY:
FYI:
Be sure to wash soft skin fruits and vegetables (three part water, 1 part vinegar) before you cut them. Use a different knife for different foods. Also, do not crosscontaminate with any raw meat anywhere.
Turkey Peppers Tomatoes/onions Apricots Almonds Oats/prunes Eggs Cauliflower/lemons Cilantro/yogurt Cashews Celery Cabbage Carrots Squash/green beans Walnuts Cantaloupe
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TO IMPROVE:
mood immune system/hair growth blood sugar levels anemia skin repair bowel function damaged tissues/brain health and immune cells anxiety level sleep quality red blood cell production blood pressure/excess fluid peripheral neuropathy constipation tissue repair/wound healing protein level white blood cell level
WHAT TO DO ABOUT DRY MOUTH
• Brush your teeth after each meal/bedtime. • Suck on ice, popsicles or lemon drops. • Use a cool mist humidifier to moisten room air. • Rinse your mouth (don’t swallow) with salt an baking soda four to six a day (1/2 tsp salt, 1⁄2 tsp: baking soda, cup of warm water). • Moisten foods with broth, sauces, butter, dressings and avoid dry foods
WHAT TO DO ABOUT THICK SALIVA Salivary glands may be affected by certain medicines and treatments. If you have saliva issues, try: • Avoiding foods that stick to the roof of your mouth. • Drinking small sips of water or tea often. • Eating/drinking warm liquids (soup, hot chocolate, etc). • Being cautious with milk products. • Keeping your mouth clean by rinsing with baking soda mix. (above). C.A.R.E. – 43
When Dining Out: at early to avoid crowds. E Ask that food be prepared fresh in fast-food restaurants. Ask for single-serving condiment packages, and avoid self-serve bulk condiment containers. Do not eat from high-risk food sources, including salad bars, delicatessens, buffetsand smorgasbords, potlucks, and sidewalk vendors. Do not eat raw fruits and vegetables when eating out. Ask if fruit juices are pasteurized. Avoid “fresh-squeezed” juices in restaurants. Be sure that utensils are set on a napkin or clean tablecloth or placemat, rather than right on the table. You can ask for plastic utencils as well. If you want to keep your leftovers, ask for a (non-aluminum) container, and put the food in it yourself rather than having the server take your food to the kitchen to do this. Ask for an extra plate to put a smaller portion of your food on, so as not to get overwhelmed.
FYI:
Treatment affects every person differently. You are not expected to just suffer through the side effects. Be honest about how you feel– with your medical team and caregiver – as most side effects can be managed or remedied in some way.
STEAK AND VEGETABLE FAJITAS Targeted Side Effects:
Fatigue, anemia, chemo brain, peripheral neuropathy
Ingredients: (Makes 4 servings) 4 large or 8 small corn tortillas ¾ pund skirt or lank steak (cut in thin slices) ¼ teaspoon kosher salt 1 tablespoon olive oil, divided 1 medium yellow/white onion, sliced 1 bell pepper sliced into thin strips 1 medium tomato, diced ½ cup chopped cilantro, no stems 4 tablespoons nondairy, non-soy cheddar cheese, shredded Preheat Oven to 275 F 1. Warm tortillas on stove then place in aluminum foil and put in warm oven 2. Heat olive oil in large frying pan, add steak and salt/pepper 3. Add tablespoon of water to pan, cover, cook for 3 minutes. Remove and place in warm oven 4. Add oninon, peppers and salt to frying pan. Cook 4 minutes, stirring often. Add tomatoes and cook until soft. 5. Take steak out of oven, cut into thin slices, stir into pan with vegetables. Heat through. For more information on nutrition and sample recipes *Pepper to taste to try during treatment: cancer.org or eatright.org Source: The American Cancer Society Complete Guide to Nutrition for Cancer Survivors: Eating Well, Staying Well During and After Cancer
C.A.R.E. – 44
Cancer: Chapter II A “second round” of cancer is something that no one wants to imagine. Whether a new type (second primary) has developed or the FYI: same kind (recurrence) has grown back, it ignites many of the same Cancer is something that feelings than the first diagnosis. Your doctor will talk with you about different treatment options and how effective each one is likely to be. one can never “get used to.” Some emotions and feelings Much like the first time, one wants to ask similiar questions about the plan of action. Be sure you understand the goal of each treatment of helplessness will return with an additional diagnosis you are taking. You might also decide to get a second opinion this – and that’s OKAY. Allow time. yourself to feel them again without frustration. Treatment decisions and the reasons for recurrence – a second cancer – are based on: • Type of cancer • Your overall health • Your personal values and wishes for treatment • The cancer’s aggressiveness • Your age • Length of time between the original diagnosis and the recurrence • How well you tolerate treatment
How am I supposed to handle this AGAIN? Although it’s easier said than done, try not to panic if you learn about a recurrence or a second type of cancer. Just as you did before, talk to your doctor if you are worried about treatment. You need to feel comfortable with this course of action and approach the journey, like you did the first time, the best way you can. Discuss all choices with your nurse or doctor, with members of your support group and especially with members of your family. Only you can make the best decision for you.
SPOTLIGHT BERNADETTE ROMERO ON A SECOND DIAGNOSIS: I knew what I had been through and that I could physically handle it. At the same time, I knew how treatment was going to feel. The most important thing you can do is try to remain positive because you will be emotional and possibly angry. You lose trust in your body because it betrayed you again.
ON SURVIVING:
Sure I have scars. But they are MY scars and they show that I fought the battle and won the battle. I don’t like the word “cancer” – we give it too much power and strength. I count my blessings for having battled cancer twice and am still here to appreciate and enjoy life today.
MENTORING OTHERS:
I enjoy talking to others who have been diagnosed. Since I’ve been through this twice, I want to inspire, encourage and share strength and optimism with them. Overall, I want to be a visual for people to see that there is life beyond those hard days!
To learn more about Bernadette’s story: visit careguide.info
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C.A.R.E. – 45
Jour
ney..
Surviving and Thriving “I’m a Survivor” These three words make a strong statement and mean different things to different people. Some people use the term to refer to someone who has completed cancer treatment. Some people use the word to refer to anyone who has ever been diagnosed with cancer. Others call a person a survivor if he or she has lived several years past a cancer diagnosis. The American Cancer Society believes that each person has the right to define his or her own experience with cancer and considers a cancer survivor to be anyone who describes himself or herself this way, from diagnosis throughout the rest of his or her life. SUR·VIVE /ser’vīv/ verb 1: continue to live or exist, especially in spite of danger or hardship. 2: continue to live or exist in spite of (an accident or ordeal). 3: remain alive after the death of (a particular person). -merriam-webster.com
THRIVE /THrīv/ verb 1: prosper; flourish.
FYI:
The most important aspect of surviving is doing one’s best to thrive regardless of your status in the journey. Cancer or not, let having the best quality of life as possible remain your focus.
It is natural to strive to get back to your life “BC” (befor e right away. Yo cancer) not get com u might ple to normal” tely “back bu create a “new t you will – so be patie er normal” nt and gentl e with yoursel f.
WHAT IS REMISSION?
The period of time when the cancer is responding to treatment or is under control, formally defines “remission.” In complete remission, all the signs and symptoms of the disease go away and cancer cells cannot be detected. Partial remission is when the amount of cancer in the body is reduced. Remission can last anywhere from many weeks to many years. One person could have many remission periods if there is a recurring cancer. One may consider a cancer that isn’t growing or where there isn’t any active treatment as a “remission period.” Just like your cancer, you get to determine what “remission” means to you.
The “Now What?” Phase There isn’t a transition period that takes you from treatment to “survivorship.” It is common for people to feel lost during this change. Many people may put their emotions on hold while they are undergoing treatment. Afterward there can be an emotional “hangover” that needs to be processed. You might feel isolated, and that’s natural. FYI: rtant to It’s extremely impo followkeep up with your . up appointments
SOURCE: American Cancer Society
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“My next appointment isn’t for three months?” You’ve had all of this oversight – and now you are seemingly left on your own. The feelings you and your caregiver might be experiencing aren’t much different from those of kids on their first day of kindergarten or college. The independence can be a scary thing and that’s okay to acknowledge. The appointments might not be something that a person longs for once they are no longer necessary. However, the confidence that someone is consistently monitoring your health and the overwhelming sense of community from places like their chemotherapy infusions or radiation sessions are both factors that may contribute to your “missing” certain aspects of your previous healthcare. It is completely normal to feel uneasy as things slow down in terms of your care. It’s normal to be affected when activities and attention are suddenly taken away. Use the time without intense treatment to relax and recuperate from what your body went through.
“Check-Up Anxiety” is Real With every piece of bloodwork, every test, every scan – there may be an innate fear of your cancer coming back, growing, or a new one forming. As time goes on, the restlessness may get better. Accept that you (and loved ones) may be irritable for a while. Cancer impacted your life, so it makes complete sense to be scared about the possibility of it returning.
PHOTOS: First day of chemotherapy; During treatment; Ten months after treatment.
From Those Who Know! –Know that you have a support system – there are so –It may take a long time to trust your body after it many people who have shared your experiences, will betrayed you. Cancer isn’t a light switch you can turn off. stand with you, and will hold your hand” –It could be up to a year before you start feeling better and some side effects are chronic. –Focusing on preventative care and getting imaging done as needed is important since your cancer (relapse or new) susceptibility is higher. – The time it takes for your hair to grow back depends on the person.
–I was confused and scared when I was told I was cancer-free. I wasn’t ready to be done. I was scared not to see my doctor anymore. –All-in-all I had three surgeons for the one surgery, so honestly, I expected to hear the news that my scans were clear.
–Though my fear of reoccurance is real, I tried to find blessings in my –When I heard the news that I was in “remission,” that was not acceptable. The “R” word was not what I experience. wanted to hear. I wanted to hear the BIG “C” word –It will always be in my mind but I am moving on with my life and putting – CURED! As time has gone by, I now comprehend cancer behind me. why I was only told remission. It’s been 18 years since those sickly days and I still have not been told I’m cured. But in my positive thoughts, I believe “I AM CURED!”
To share your survivor experience: visit careguide.info
C.A.R.E. – 47
SPOTLIGHT JODI MCGINNIS PORTER
When I was first diagnosed with cancer, I was a bit in denial. But I vowed that I wasn’t just going to sit down and take it. I wanted to raise awareness. Sure, I had to say goodbye to my breasts... but I wanted to do it my way.
BEFORE THE SURGERY
The night before my double mastectomy, I threw myself a “Goodbye Boobs Party!” I danced and had a great time with my amazing friends.
RAISING AWARENESS
I decided to create a team for American Cancer Society’s Making Strides Against Breast Cancer Walk that year. Thanks to my supportive friends and co-workers, in less than a month “Jodi’s Rockers for Knockers” Team raised $5,000+ for the cause!
TO OTHERS
Be your own advocate.Write your questions down.Take a friend to appointments. Laugh a lot. Be kind to yourself. Find joy in the little things in life. LIVE ONE DAY AT A TIME.
OVERALL
It was no picnic, but a sense of humor goes a long way in keeping your sanity and helping you recover.
To read a column Jodi wrote, see more pictures and learn about her story online: visit careguide.info
SPOTLIGHT MICHAEL KIERST I’m approaching my third-year anniversary as a pancreatic cancer survivor. I know I am a lucky man. I’m very appreciative of my caregiver, my wife, our families and our friends. I am grateful to all the medical providers I have been fortunate enough to come in contact with. Sure, it has been rough. I make the analogy to a boxing match, only this match comes without a set number of rounds. And in this match, you know you are going to get Plans knocked down every round.You just have to Survivorship Care get back up, go to your corner and get ready to do it again. It feels like a test to see, “How tough are you?” I am thrilled to be enjoying my life. It is sweet and worth all the effort. Thank you, Cancer Foundation of New Mexico.
To learn more online about Michael’s story: visit careguide.info C.A.R.E. – 48
JENNIFER PORTER, NP
The
NURSE PRACTITIONER
Expert is
IN
Survivorship starts at diagnosis and continues for the rest of the cancer patient’s life. Cancer and its treatments change people. I have often heard that, “cancer has been good for me,” as it can help people live their life more fully. It can also be a scary and overwhelming time. We encourage everyone to talk with those who have been through or going through their same experience. Live your life! Play, laugh, and have fun! To learn more from & about Jennifer Porter, NP CHRISTUS St.Vincent Cancer Center: visit careguide.info
Survivors: Save the dates... Put Life Back in Your Life! Cancer: Thriving and Surviving Program | A Free Six-Week Workshop Adapted from Stanford University’s Chronic Disease Self-Management Program Learn new skills to coordinate all the things needed to manage your health, as well as to help keep you active in your life and relationships. Family members and caregivers are welcome to attend too! Fridays from April 7, 2017 – May 12, 2017, 10 a.m-12:30 p.m. CHRISTUS St. Vincent Holistic Health & Wellness Center 490B West Zia RD, Suite 4, Santa Fe Call or email: Karen Gano, (505) 913-5731, or Kathy Parkhill (505) 913-5516
6th Annual Living With & Beyond Cancer Conference March 18th, 8:30 a.m.-4:30 p.m. Full day of free educational and entertaining events Central United Methodist Church 201 University Blvd. NE, Albuquerque For more details and to register: cancersupportnow.org or call Mark at (505) 270-2462 Cancer Support Now Helpline 505-255-0405 or 855-955-3500 Cancer Services of New Mexico | www.livestrongcareplan.org
C.A.R.E. – 49
Found in the Fight Cancer can be a devastating blow on so many levels – on those living with it and those around them. No one is expected to see cancer as “a blessing” or seeat the glass half-full all the time. There may be gifts (present for some and more present for others, provided by a cancer journey. A cancer diagnosis is a very personal and different situation for everyone. Cancer truly is a ride, one with highs, lows and unpredictable twists and turns along the way. It also can be a journey that builds strength and helps everyone affected by it to reflect on what is most important to them, and igniting growth in some direction.
How can I transform this experience into something positive? You don’t have to. Not one bit. Cancer can be this enemy that you resent, and that’s totally, completely and utterly appropriate. Nothing says you have to find a “bright side” to all of this.
But some have found new perspectives, ambitions, careers or people that they attribute to their experience with cancer.
SPOTLIGHT CAROLYN SANDOVAL As a cancer survivor of more than 19 years, I feel a great sense of satisfaction. My fight with cancer was an experience I will never forget. The power of faith and prayer helped me. It shaped me into a better person and a person that now appreciates life to the fullest. But most of all I reached so deeply into my own personal faith that it made me a more compassionate person. I take every opportunity to try and comfort those dealing with cancer and encourage them to keep fighting. It was my cancer that now inspires me to do so.
FROM NOW ON:
Since remission, I believe my place is to help more than ever. I don’t want anything in return. I got my life back. Now it’s my turn to help others.
To learn more online about Carolyn’s story: visit careguide.info
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KACIE CAPPS, RN
A CLOSER LOOK AT HOW CANCER LED TO A CAREER
The
Expert is
IN
I decided to go to nursing school when I was 19. My grandma had been diagnosed with cancer, and she decided treatment was not for her. She did go to an outpatient clinic for a few weeks for supportive care, such as hydration. I took her to these appointments and really was in awe of the nursing staff. I was very nervous just going to the clinic and couldn’t imagine how the patients must have felt but the staff seemed to put everyone at ease. It ended up being a very positive and life-changing experience.
“
“
From Those Who Know! – Cancer had me reassess what was important and find a new purpose of the things and people that truly make me happy. It enhanced my way of living and gave me a sisterhood with some amazing women who can understand my journey. – Having cancer gives you a better appreciation for life, knowing how truly fragile it is. Let appreciating life and all our blessings be something that hopefully we can all aspire to truly embrace every day. – Since remission, I have an enhanced belief that my place is to help more than ever. I don’t want anything in return. God gave me my life back. Now it’s my turn to help others. – Having my mom, and two other women in my family, diagnosed with cancer has made me realize how careful I need to be with my body. I have become more diligent about going to the doctor and making sure I take advantage of any opportunities to take care of myself. – Cancer was a gift. – Cancer is not a gift.
–M y family has gained a greater perspective. We don’t sweat the small stuff anymore. My son is even now in medical school to help others because of my experience. – I didn’t gain anything positive from my diagnosis. It was not a blessing in my life. – You’ll learn who your true friends are and start to value and appreciate them so much more. – I learned what supporting other women looked like, and what empowerment looked like. –M y dad’s cancer gave me time with him. I was blessed with years of chatting and laughing during chemotherapy infusions…road trips and flights to his favorite places…watching movies in his hospital room… nights of talking ‘til one or both of us falls asleep…and valuing every minute together so much more. So, am I annoyed at cancer? Absolutely. But I truly can’t be mad at it…because if I were, I’d be forgetting all of these special moments… those valuable memories…and that extra intentional time I had with him. Time I wouldn’t give back for absolutely anything in the world.
– I don’t take life for granted anymore.
To share what you “found in the fight”:
visit careguide.info C.A.R.E. – 51
Reach Out...You Are Not Alone
Not everyone has someone in their life that they would identify as their “caregiver.” You might have family and/or friends support you and attend appointments with you, or you might feel like you are navigating this seemingly on your own. Know that you DO have support in your cancer journey. You actually have a plethora of people who work to help lighten your load and support you through your challenges.
The
Expert is
IN
KAREN GANO, LCSW
Let your doctors and nurses take care of your physical being. Let social workers/ counselors and patient navigators help you find the resources that best fit YOU, while attending to your emotional concerns, counseling, and crisis management.
ONCOLOGY SOCIAL WORKER
WITH OR WITHOUT A CAREGIVER?
At the time of your diagnosis, during treatment, at the point of a possible recurrence, or during any crisis in your life… Karen is there for you. She will act as the liaison to get connected with the various programs and services available to you, based on your individual experience. With 25+ years of experience, she knows how to create a team and safety net for you to depend on and find networks to connect with. She can accompany you to doctor’s visits for those without a caregiver so that you don’t feel alone. She has a passion for social work and has compassion to help those patients, families, and caregivers in need. She recognizes that everybody’s story is different and will work with you to determine what resources would be best suited for your life and what is important to YOU.
I. T ell your oncologist and health care team II. Determine what your needs are. III. B e honest with your friends, loved ones, co-workers (if applicable) about how they can help. IV. Use the resources, programs and professionals available to you. V. Seek alternative options (i.e.,home health care, community agencies, for additional assistance if needed.)
“I’m here to support and advocate for you. I believe in your right of self-determination. I will listen, discuss, and explore things with you and make recommendations. Acknowledging what’s important to YOU. I am passionate about providing you with helpful tools and meaningful resources.”
(505) 913-5731 | Karen.gano@stvin.org **FREE** to all those associated with the CHRISTUS St. Vincent Regional Cancer Center
SPOTLIGHT PATIENT NAVIGATOR ONCOLOGY: Beth Carolozzi, PhD, RN, OCN
The objectives of the nurse navigator working with the patient and family are: • Assess and identify any barriers to receiving the care recommended by your provider. • Connect patients and families to resources and supportive care staff and services to eliminate or reduce barriers to care. • Facilitate the communication among patients, family members, and healthcare providers. • Assess patient’s understanding of medical problems and treatment options. • Provide compassionate support to alleviate stress and anxiety. • Ensure timely treatment for cancer patients. • Assist patients in making informed decisions about their cancer care through education and coaching. (505) 913-3061 | Beth.carolozzi@stvin.org **FREE** to all those associated with the CHRISTUS St.Vincent Regional Cancer Center C.A.R.E. – 52
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HELPING HANDS IN THE HOME: There may be a time where your load, with or without a caregiver, feels too heavy. Additional support where you live is another way to help attend to your health needs.
HOME MEDICAL CARE The main mission of home health care is rehabilitation, usually after hospitalization. Home health care also provides skilled nursing care to monitor symptoms of illness; monitor blood pressure, fluid status or blood glucose; give education about therapy; and make sure medications are being taken properly.
HOME NON-MEDICAL CAREGIVERS In-home agencies provide that extra layer of care: meal preparation, light housekeeping, mobility assistance, medication reminders, personal care and companionship.
The American Cancer Society offers personal guidance during a patient’s cancer journey through their Patient Navigator Program. During a visit, cancer patients will be connected with information, day-to-day help, and emotional support programs and services. The American Cancer Society patient navigator can also provide information on your cancer diagnosis and treatment options, assist with everyday concerns like transportation and help meet your specific cancer-related needs. For more information: Contact Eileen Bilynsky, American Cancer Society, Patient Navigator, eileen.bilynsky@cancer.org 505-262-6018
C.A.R.E. – 53
For many cancer patients, getting to and from the doctor’s office or hospital for treatment is one of their toughest challenges. Every cancer diagnosis is a personal journey, but we want you to know that you don’t have to face it alone. Learn more about our free transportation program by visiting cancer.org/roadtorecovery or by calling 1-800-227-2345.
It’s more than a ride to treatment. It’s a ride to hope. ©2017 American Cancer Society, Inc. Model used for illustrative purposes only.
C.A.R.E. – 54
NATIONAL LAB WORKERS W/CANCER SANDIA (1946-1994)…LOS ALAMOS (1943-1995) Thank You Americans. You worked at least a year providing for our national security at the AEC/DOE Labs. You later got cancer. Now I will help you or your direct survivors as I’ve done for 2,200 very happy families, 800 of them in New Mexico. $150,000 to $400,000 lump sum entitlement awards are available for 23 common types of cancer. Let me ask a few simple questions for five minutes. I’ll give you a free and frank assessment as to whether I can help. I’m not a lawyer and this is no lawsuit. I am a national expert on EEOICPA entitlement. You get me, the professional, not a low paid paraflunkie. I unravel the frustrating red tape so you don’t have to. Nobody does it better. You get paid directly by the U.S. Treasury. If so, then you pay me just 2%. No appeal fees. No fine print. Already got your $100,000 RECA award as a uranium miner, miller or transporter? I might now be able to get you another $50,000 under EEOICPA Part B, plus up to $250,000 added Part E benefits (impairment or survivor awards).
858.756.1494
7 days/7 nights, phone right now! Internet? Type in FROWISS.ORG ALBERT B. FROWISS, SR. Email: FROWISS@FROWISS.ORG P.O. BOX 909, RANCHO SANTA FE, CA 92067 C.A.R.E. – 55
Getting Connected Sometimes all you need is phone service and internet/wi-fi to engage with others. Check out these ways to virtually engage with others!
Visit careguide.info to quickly link to all of these sites!
Online Support American Society of Clinical Oncology ASCO.ORG CANCER.NET CANCER.ORG Provides information on treatment options, advice on coping with side effects, health insurance. From the home page -> Treatment and Support CANCER SURVIVORS NETWORK Join an online community by and for people with cancer and their families. Find and connect with others through the member search, discussion boards, chat rooms and private CSN e-mail. You can also create your own personal space to share more about yourself by starting an online journal (blog), with photos, resources and more.
My LifeLine.org Cancer patients and caregivers can connect with family and friends, allowing them to share their cancer journey, get support and focus on healing. When you set up a **FREE** webpage, you can share updates and photos with selected family and friends in one secure place; get the help you need by organizing meals, rides to treatment, and more through the Helping Calendar; feel empowered by messages of love and support from friends and family; review and share cancer resources vetted by experts. CANCERSUPPORTCOMMUNITY.ORG Online support group led by professionals, offering information on stress management. FREE EDUCATIONAL BOOKS ONLINE:
 National Cancer Institute: cancer.gov/ publications FREE SEMINARS: Go to LosAlamosCouncilOnCancer.org to watch seminars on numerous cancers.
American Cancer Society has live cancer information specialists 24 hours a day, seven days a week at 1-800- -227-2345 to answer questions, share information for understanding a cancer diagnosis and help find local resources through treatment and recovery.
C.A.R.E. – 56
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FACEBOOK PAGES TO “LIKE”:
C Cancer Support Now C Livestrong C Cancer Support Community Navigate Cancer
FACETIME: All iPhone users are able to video message using FaceTime. This is a great way to connect with distant loved ones.
Foundation
C CancerKicker.org C Cancer Foundation for New Mexico C Cancer Services of New Mexico C American Cancer Society FREE VIDEOS: Youtube.com Cancer Survivor Channel Pinterest.com Cancer Inspirational Videos or Quotes DOWNLOAD SKYPE: www.skype.com **FREE** video chatting with loved ones from afar
CARING BRIDGE:
caringbridge.org Free personal websites to stay connected to family and friends during illness. Post and receive pictures and messages privately online. It’s helpful for you or for a loved one to update everyone at once without feeling the need to individually tell people about your health. Caring Bridge allows loved ones to keep up with your journey.
Cancer Support Helpline Volunteers with a personal experience of cancer provide one-onone peer support seven days a week. Call 505-255-0405 or 855-955-3500 People Living Through Cancer 1-888-441-4439 pltcnm.org/emotional-support/
FYI:
OTHER SITES: triagecancer.org cancercare.org caregiving.org caregiveraction.org Ihadcancer.com
C.A.R.E. – 57
If you don’t have electronics, almost all local libraries offer free computer time.
Gain Support People attend support groups because they are looking for “fellow travelers,” others who really understand the experience of caring for and/or loving someone with cancer. Some people reject support groups because they are initially hesitant to talk to a group of strangers about something as personal and heart-wrenching as cancer. Some people are embarrassed that they cannot handle this trauma alone. Know that you aren’t expected to. Perhaps this is the most demanding period of your life. Talking with people in similar circumstances can make a big difference.
FYI:
Support groups don’t always have to be about sharing. You may just listen if that’s all you feel comfortable with.
Cancer support groups are meetings for anyone touched by cancer and they are a good place to talk with others in similar situations.
SUPPORT GROUPS
Support groups can be comforting places for people undergoing cancer treatment, people who have loved ones with cancer and people who are caregivers. All of the following special support groups are free and offer a place where you can: • share what it’s like to have cancer; • exchange and brainstorm tips about coping with cancer; • be around other people who understand and share what you’re going through. SOURCE: American Cancer Society
From Those Who Know! –I’m grateful for the experience of the group, even when I don’t say much. Sometimes it’s more important to listen than to talk! –The generosity of spirit that I experienced in that hour was profound. It has helped me tremendously as my family and I help my sister through her pancreatic cancer journey. –This dual love is energizing and uplifting, you know you are loved and that you love.
C.A.R.E. – 58
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Santa Fe Area Support Groups Tuesdays
***TOGETHER – FOR CAREGIVERS Every Tuesday 11 a.m.-12:15 p.m. ****CANSURVIVE Every Tuesday 1-2:30 p.m. (location for these below) SURVIVING SISTERS GROUP Second and fourth Tuesdays of every month. Contact Ms. Fred, 505-577-1032 SANTA MARIA DE LA PAZ CANCER SUPPORT GROUP First three Tuesdays of the month 1:30-2:45 p.m., Contact Sister Colleen, 505-629-4212 PEOPLE LIVING WITH CHRONIC ILLNESS SUPPORT GROUP 2nd and 4th Tuesdays each month 2-3 p.m. Contact Eileen, 505-428-0670 ej@eileenjoyce.com, for location
Wednesdays
***LIVING WITH CANCER Every Wednesday, 1:15-2:30 p.m., Cancer Foundation offices MYELOMA SUPPORT GROUP (for patients, caregivers and family) First Wednesday of every month, 11:30 a.m.-1:30 p.m., CHRISTUS St. Vincent Holistic Health & Wellness Center, RSVP at: 505-690-4597 benjamin4@cybermesa.com -FREE lunch providedFAMILY CAREGIVERS SUPPORT GROUP Second and fourth Wednesdays each month, 2-3 p.m. Contact Eileen, 505-428-0670, ej@eileenjoyce.com, for location
Saturdays
****EMPOWERING OURSELVES TO HEAL A monthly workshop for women with cancer. First Saturday of every month,10 a.m.-12:30 p.m.
****CANCER FOUNDATION FOR NEW MEXICO 3005 S. St. Francis Dr., Suite 3B, Santa Fe 87505, Contact Caroline Owen, 505-955-7931 ext. 3, caroline@cffnm.org
Albuquerque & Surrounding Area Support Groups CANCER SUPPORT NOW LGBT Cancer Suvivor Support Group first and thrid Tuesdays each month, 6:30-8:30 p.m., New Mexico Cancer Center, 4901 Lang Avenue. Contact 505-440-0044 or info@cancersupportnow.org
Tuesdays
TAKING CHARGE Support Group for Blood Cancer Survivors Family and Friends, first Thursday of every month 7–8:30 p.m., 3411 Candelaria, Suite M, contact Jamie McDonald MSW at 505-291-2006
Thursdays
LOS ALAMOS COUNCIL ON CANCER Free and informal cancer support for patients and survivors. The frequency of the meetings is based on the needs and demands of the individual. Contact Amy Woods at 505-412-0351 For a full listing of UNM Cancer Center Support Groups cancer.unm.edu/patients/patient-care/support-groups-programs/ C.A.R.E. – 59
WHAT IF YOU COULDN’T AFFORD TO GET TO YOUR CANCER TREATMENTS? C.A.R.E. – 60
The costs of a cancer diagnosis are
more than just medical. For countless northern New Mexicans, the costs of getting to treatment in Santa Fe are
just not affordable. So they may not get treatment at all.
That’s where the Cancer Foundation for New Mexico steps in. We help patients
who do not have the resources to pay for
transportation, lodging, and meals so they
can access treatment. To date, no patient who qualifies for our help has been turned away.
We also offer free support groups to all patients and caregivers to help
them through this journey. We offer four groups:
• CanSurvive for anyone with a new cancer diagnosis, in treatment, or recovering from treatment • Together: A Group for Family & Friends of Cancer Patients, meeting the unique needs of the caregiver • Living with Cancer for patients with recurring or metastatic cancer • Empowering Ourselves to Heal, a workshop for women with cancer To apply for assistance or to donate,
visit www.cffnm.org or call 505-955-7931, ext. 3
TOGETHER, WE HELP SAVE LIVES C.A.R.E. – 61
Programs & Services Having cancer is never easy, but finding help in the fight should be. Whether it is finding means to travel to appointments, locating an affordable place to stay, getting help receiving food or simply receiving the tools you need to help you, New Mexico nonprofits can help. Financial Assistance
Help Paying for Medications
Free/Reduced Cost Resources
If you are a New Mexican with cancer receiving chemotherapy or radiation treatment in Santa Fe, you qualify for financial assistance from the Cancer Foundation for New Mexico in these categories: • Travel Patients who come to Santa Fe for their treatment may qualify for reimbursement based on the miles traveled from their home to the treatment center and back. • Hotel Rooms are provided to patients receiving treatment on consecutive days and for those living at least an hour away from the treatment center. • Free Support Groups See “Gain Support” pg 58-59 for listing • Volunteers Provide one-on-one support for patients and families in treatment rooms. • Grocery cards can be used at participating stores. • Spanish-speaking interpreter/translator can be arranged to help during exams and treatments. 505-955-7931, ext. 3 • To learn more about CFFNM or to donate, visit www.cffnm.org or call 505-955-7931, ext. 3; 3005 S. St. Francis Dr., Ste. 3-B, Santa Fe • For professional guidance and support: *Cancer Foundation for New Mexico, Caroline Owen, MA, LMSW, Patient Services Coordinator, 505-955-7931, ext. 3 The St. Vincent Hospital Foundation will pay pharmacy costs of up to $1,500 per year for qualifying patients of the CHRISTUS St. Vincent Regional Cancer Center. Ask your health care provider for more information.
Cancer Services of New Mexico Free Family Cancer Retreats: SPRING 2017: April 21-23 | FALL 2017: September 8-12 Educational sessions on treatments, clinical trials, talking to kids about cancer, pain management, insurance and finances. Albuquerque Marriott Pyramid North, 5151 San Francisco Road. NE, Albuquerque – contact mike@cancerservicesnm.org or call 505-239-4239. Cancer Treatment Organizers: Free binder and tools to help manage and organize the paperwork associated with a cancer diagnosis Get one mailed to you for FREE by calling Cancer Services of New Mexico’s Stephanie Michnovicz at 505-999-9764.
C.A.R.E. – 62
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Resource Centers and Programs
Hotel stays: The Hope Lodge® program provides free overnight lodging to cancer patients and their caregivers who have to travel away from home for treatment. We also partner with local hotels across the country to provide free or reduced-rate rooms for cancer patients and their caregivers traveling for treatment. Contact 1-800-227-2345. The Look Good Feel Better® program is a free, community-based workshop where beauty professionals teach those facing cancer hands-on tips to help them cope with the appearance-related side effects of treatment. The program is a collaboration between the American Cancer Society, the Personal Care Products Council Foundation, and the Professional Beauty Association (see pg 72-74). To register, call 505-262-6016. Road to Recovery program: Volunteers for the Road To Recovery® program drive cancer patients to and from their treatments. That way patients can focus on getting well without the added stress of managing their own travel. Contact 1-800-227-2345. For more information about programs and services contact- American Cancer Society Program Manager, Shirelle Besse Shirelle.Besse@cancer.org or call 1-800-227-2345
Food Assistance MEALS ON WHEELS
Kitchen Angels: For residents of Española, Los Alamos, Pojoaque and Santa Fe. Call 505-471-7780, www.kitchenangels.org. Meals on Wheels: For residents of Santa Fe County. Call 505-992-3094
FOOD STAMPS Other Transportation
Santa Fe Ride Program: santafenm.gov/santa_fe_ride (Apply for $2 a ride) Uber: Download the app for real time rides
UBER Taos and Albuquerque Area
Taos Area: Holy Cross Hospital’s Cancer Support Services provides free, non-medical supports to people in Taos & Colfax Counties who are struggling with cancer. For information on the services and to apply go to: taoshealth.com/taoscancersupportservices/ or call 575-751-8927 or send an email to jpfeifer@taoshospital.org. Albuquerque Area: The Pancreatic Cancer Action Network supports those affected by pancreatic cancer | www.pancan.org Nancy Murphy Bowles nbowles@pancanvolunteer.org
C.A.R.E. – 63
Cancer Services of New Mexico’s
2017 FAMILY CANCER RETREATS A free educational program for New Mexico’s adult cancer patients/ survivors, their family members and loved ones who care for them
SPRING: April 21-23, 2017 Marriott Pyramid North Hotel, Albuquerque, NM FALL: September 8-10 Marriott Pyramid North Hotel, Albuquerque, NM
The Program During the weekend, we will intersperse lectures and discussions on a variety of cancer-related topics with fun activities that provide a break from the day-to-day challenges of living with cancer. Planned educational sessions include: • Patient and Family Communication • New Developments in Cancer Treatment • “Ask the Oncologist” Panels • Coping with Treatment-Related Side Effects • Genetic Testing: What Does it Tell You • Talking with Kids About Cancer • Caring for the Caregiver • East meets West – Lessons from Science and Ancestors • Myth Busters: Cancer Pain, Palliative Medicine and Hospice • Cancer-Related Legal and Insurance Issues • You’ve Completed Treatment – Now What? • Screening and Detection for Survivors • Moving from Surviving to Thriving • Meditation, Yoga, and Creativity Workshops
“I highly recommend attending the Family Cancer Retreats. Everyone around you has been through what you are going through. I felt ‘normal’ all weekend.” – D. VIGIL, PARTICIPANT
Logistics: Facilities can accommodate up to four people per family, sharing a hotel room with a private bathroom. Participants must be New Mexico residents, and may include: • One adult cancer patient/survivor; • One adult family member or loved one who has served as their primary caregiver • Two additional family members or friends. If these arrangements will not meet your family’s requirements, please contact Cancer Services of New Mexico.
The entire program, including meals, lodging, and all educational activities is provided at NO COST to participants The retreat provides informal *sessions, where you can interact with those who are coping with similar issues. *Supervised child care and recreational activities will be provided for children and teens during the educational sessions.
TO APPLY: Thanks to Our Supporters! (as of 1/9/17) Visit www.CancerServicesNM.org
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FAMILY CANCER RETREAT
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Cancer Services of New Mexico Cancer P.O. Box 51344 Albuquerque, NM 87181-1344
for New Mexico’s Marriott Pyramid North Hotel
April 21-23, 2017
Marriott Pyramid North Hotel Services of NewAlbuquerque, Mexico NM patients/survivors, adult cancer P.O. Box 51344 Albuquerque, NM their family members and Albuquerque, NM 87181-1344 For more information about our Phone: (505) 239-4239 loved ones who care for them Family Cancer Retreats, or about Email: info@CancerServicesNM.org
The Palliative Path PAL·LI·ATE /’palē āt/ verb 1: make (a disease or its symptoms) less severe or unpleasant without removing the cause 2: allay or moderate (fears or suspicions) 3: disguise the seriousness or gravity of
PAL·LI·A·TIVE /pāl’ē-ā’tiv, -ē-e-tiv/ adj. 1: (of a medicine or medical care) relieving pain without dealing with the cause of the condition. noun 1: a palliative remedy, medicine, etc. -merriam-webster.com
FYI: Palliative care is appropriate at any age and any n, of any stage of a serious illness and can be provided along perso Any FYI: with curative treatment. It is delivered by trained with any type age, a from The care specialists who work together with doctors and of cancer, at ANY palliative doctor does nurses in a team-based approach that focuses on stage, may receive or away NOT take the patients’ needs, explains treatment options palliative care. replace care from an and gives patients and their families a voice in ary prim or t oncologis determining their treatment and care. care physician (or any rs). othe Palliative care is a growing field of specialized medical care that improves the quality of life of patients and their families by focusing on relief from pain, stress and other often debilitating symptoms of treatment for a serious disease such as cancer.
of a l el r b Disease and Prognosis
Advance Care Planning End of Life – Hospice
Discussion about Levels of Care Community Resources
Mental/Spiritual/ Emotional Support
Ways to Improve Health and Well being
Realization of Goals
Goals Ethical Issues Psycho/Social/Spiritual Support
Hos
pice
C.A.R.E. – 66
Progression of Disease
oncerns Palliative Care Can Help with?
Pain
iat
Nausea
Fatigue Breathing Difficulties Anxiety
Problem Solving
of C Types
Pall
Vomiting
iv
e
Insomnia Diarrhea/ Constipation
re
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Depression
Point of Diagnosis
Ca
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It aims to eliminate physical and emotional discomfort to enable a deeper focus on living. It provides a person with, or without a caregiver, with a chronic illness that extra layer of assistance. Although it does not cure the disease, this SUPPORTIVE CARE can help provide an “umbrella” of support in improving the quality of life:
Common Symptoms Palliative Care Tr
eats
Quality of Life Symptom/Side Effect Management Pain Management
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DOUGLAS EGLI, MD, FACP
The
PALLIATIVE CARE PHYSICIAN CHRISTUS ST.VINCENT HOLISTIC HEALTH AND WELLNESS CENTER Q. What is a common myth about palliative care? A. P alliative care is NOT end-of-life care. It’s care focused on improving the quality of life for those people with serious illness. Q. W hen should and how long can one see a palliative care doctor? A. Anyone with a life-limiting serious illness can see a palliative care doctor at anytime about any issue that is affecting their quality of life. There are no limits on visits. Q. W hat questions should one ask a palliative care specialist or physician? A. There are no right nor inappropriate questions to ask. Palliative care specialists are there to discuss any questions/issues/fears that are affecting the patient’s quality of life. Through eastern and western medicine, a palliative care physician focuses on your physical, spiritual and emotional wellbeing as you navigate your serious illness. care-ad-hhw-hp.qxp_Layout 1 2/15/17 2:45 PM
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Q. H ow does does palliative care help with the management of symptoms and side effects? A. The palliative care team uses a multidisciplinary approach to the patient/family issues with each discipline looking at the issues from their particular area of expertise. These are combined into a care plan. The palliative care team typically spends more time devoted to quality of life issues. Q. H ow are palliative care social workers/counselors different than others? A. The palliative care medical social worker is focused solely on patients/families dealing with serious illness. Therefore they have more expertise and experience in the issues that arise in these situations.
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INTEGRATING MIND, BODY & SPIRIT TO HEAL THE WHOLE YOU The CHRISTUS St. Vincent Holistic Health and Wellness program brings together different healing methods to promote wellness of mind, body and spirit. Palliative Care addresses the special needs of patients at any stage of a serious illness, while Integrative Medicine combines Eastern approaches, such as acupuncture and mindfulness training, with conventional Western Medicine for healing of the whole person. Our team is made up of palliative care and integrative care specialists, social workers and chaplains, and we invite active participation from patients and family.
HOLISTIC HEALTH & WELLNESS 490 B. WEST ZIA ROAD, SUITE 4 • SANTA FE, NM 87505 505.913.3820 WWW.STVIN.ORG C.A.R.E. – 67
Therapy: Body, Mind and Soul Throughout cancer, people may feel like their lives are consumed with going to appointments, taking the medicine that has been prescribed and undergoing treatments. This all is crucial in feeling better. However, medication and treatment are not the ONLY ways to help your body feel good! The concept of “holistic wellness” refers to an approach to health and healing that looks at the entire person, not just the diagnosis. Health refers to physical, mental, emotional and spiritual health. It is a team approach utilizing the expertise of doctors, nurses, acupuncturists, yoga teachers, physical therapists, health coaches, etc. AND the patient. There are many local programs that can help you through the physical, mental and emotional stresses of the standard medical treatments throughout your cancer journey.
WHAT IS COMPLEMENTARY MEDICINE
Complementary medicine is used alongside standard medical care. People use complementary therapies for a variety of reasons, including:
v To help cope with side effects of treatment v To ease worries and stress of cancer v To try to treat or cure their cancer COMPLEMENTARY THERAPIES GENERALLY INCLUDE: Yoga | Tai Chi | Qigong |Mediation, Massage | Acupuncture Chinese Herbs, Spiritual Care & Healing Guided Imagery | Antioxidants | Aromatherapy | Art Therapy | Chiropractic Cognitive-Behavioral Therapy | Dietary Supplements | Exercise Herbs and Extracts | Hypnosis | Intercessory Prayer Meditation | Multivitamins | Music Therapy Pet Therapy | Relaxation Therapy | Therapeutic Massage Spiritual Healing | Tea
ERIC BUCKLEY, DOM A CLOSER LOOK AT ORIENTAL MEDICINE
The
The benefits of Oriental Medicine include drug-free assistance with a host of medical issues, including but not limited to pain management, neuropathy, fatigue, nausea, loss of appetite, bowel imbalances such as constipation or diarrhea and psycho/spiritual support for concerns that may arise that lead to anxiety or depression. We also utilize herbal medical formulations that have been tried and true over thousands of years in order to manage a wide range of symptoms that are difficult to treat. We take into consideration the patient’s
C.A.R.E. – 68
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medications and primary treatment plan in order to not conflict with the goals of their oncologists and other primary care physicians. For specific therapy questions contact Eric Buckley | ebuckley@st.vin.org 505-913-3821. For all programs and services, contact Alysha D’Amour at 505-913-3820.
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THE ST. VINCENT HOSPITAL FOUNDATION PROVIDES ACUPUNCTURE AND HERBAL TREATMENT FOR QUALIFYING PATIENTS • ACUPUNCTURE THERAPY & HERBAL THERAPY* Doctors of Oriental Medicine certified in oncology • MASSAGE THERAPY* Therapists certified in oncology *Many insurances companies have a copay for such services. For activities that your insurance doesn’t cover, the CHRISTUS St. Vincent Holistic Health & Wellness Center offers a same day pay 40% discount on all acupuncture and massage
The
OBIE, ONCOLOGY MASSAGE THERAPIST Massage helps the body relax; breathing is fuller and there is a general sense of well-being. It provides a time for the patient to have the undivided attention of the therapist for up to about 20-25 minutes. Massage provides stimulation to the soft tissue of the feet (and/or hands) and to reflexology points that refer to other parts of the body. These points are stimulated so that organ systems can be supported and parts of the body that are dealing with pain or other issues can be gently supported. This can help with
FYI:
Acupuncture can help alleviate neurapathy
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nausea prevention, energy enhancement and pain reduction. Experience of beneficial touch that massage offers can help a patient feel that their body is capable of feeling comfort, relaxation, and nurturing, and that their body does not always have to be guarded and vigilant. Massage helps the time pass in a more pleasant way, helps their body relax, and can support other parts of their body that might be working hard because of the treatments. TRY THIS AT HOME: –Make the alphabet with your feet elevated to keep fluids moving to help reduce swelling. –Someone at home should give foot massages! It’s good to be touched, relieves stress and helps with neuropathy.
An Option...
A Resource...
A few studies have found that inhaled (smoked or vaporized) marijuana can be helpful treatment of neuropathic pain (pain caused by damaged nerves) and food intake in HIV patients. Studies have long shown that people who took marijuana extracts in clinical trials tended to need less pain medicine. Some animal studies also suggest certain cannabinoids may slow growth and reduce spread of some forms of cancer. While the studies so far have shown that cannabinoids can be safe in treating cancer, they do not show that they help control or cure the disease. If you do choose to address side-effect issues with any cannabinoids always consult with your doctor and know that disclaimers, like “I’m only doing this because…,” are unnecessary. Do what feels good during your treatment.
Holding Courage Retreats (for women with recent cancer) four-day haven in a nurturing environment where love and care greet women facing the ultimate challenge. Activities include: Yoga and movement | Meditation Writing | Breathwork Massage | Musical activities Rest time | Walking the labyrinth For more information & retreat dates contact: HolidayCourageRetreats@gmail.com or call Deena at 505-927-6903.
C.A.R.E. – 69
The CHRISTUS St. Vincent Holistic Health & Wellness Center offers movement classes year-round. FYI: YOGA FOR HEALTH (Special classes for cancer patients Yoga is for and classes for general health): Helps facilitate increased BOTH men strength, flexibility, self awareness, emotional balance and and men. mental clarity. Practice a variety of poses, breathing and relaxation techniques. MEDITATION IN MOTION YOGA (Special classes for cancer survivors + classes for general health): A fluid, gentle yoga class that incorporates music, lyrical movement and breath. HEALING WITH QIGONG The slow, meditative movements of this ancient healing art serve to improve health, vitality and balance. TAI CHI FOR HEALTH & RELAXATION Tai Chi Chun is a slow moving, meditative ancient art that imporves health, wellness and balance and will enhance body awareness to give rise to relaxation and renewed energy for everyday life. STEADY AS YOU GO (SAYGO) Classes to help prevent falls and improve balance, leg strength, flexibility, general fitness and well-being. FYI: Before starting a For this month’s schedule and updates on all classes new routine, exercise call 505-913-3820 or email Alysha.DAmour@stvin.org program or using * = $10 class | All classes take place at complementary medicine ALWAYS 490 B West Zia, Suite 4 Santa Fe, NM consult your doctor. (by the CHRISTUS St. Vincent Regional Cancer Center)
Mindfulness Mindfulness means paying attention in a certain way: On purpose...
In the moment...
Without judgement of anything...
HYPNOSIS
Studies in medical literature support that hypnotherapy benefits people living with cancer. Symptoms related to cancer and it’s treatments have been effectively controlled with hypnosis; less pain, less nausea, less fatigue, and less emotional upset. Hypnosis offers a nonpharmaceutical means of pain control, accelerates the natural healing process that strives to create less anxiousness and worry through relaxation techniques, and increases reports of improved quality of life. Hypnosis is also a great tool for caregivers who often deal with symptoms related to the caregiver role; such as stress, fatigue, sleeplessness, and changes in appetite and other normal activities.
FYI:
Both qigong and tai chi are extremely gentle on the body and can even be done from a seated position.
“My pain went from a 8/10 to a 2/10 during a session; I surprised myself and my doctor.”
C.A.R.E. – 70
-Patient undergoing cancer treatment
HYPNOSIS FOR A CHANGE Amy Fredericks, CMS-CHt, FIBA 505-946-7588 amy.fredericks@ hypnosisforachange.net
Healing and Mindfulness Healing occurs on many different levels. It is not your fault that you have cancer, so keep loving and trying to fulfill yourself. Many researchers believe that doing something creative, pursuing a dream or passion, can be a key to healing, physically and psycho-spiritually. When someone is too ill to do much that may mean something as simple as getting some pens and an adult coloring book, journaling and writing poems, or little stories about what they are experiencing. Cancer automatically puts people in an unfamiliar are to their life. It might be hard to initially step outside of the box and do something you never have. That is natural, but you may be surprised how doing so may positively affect you. Know that it might take some courage, but if your doctor has no reservations, allow yourself to try a new activity or pick up a new hobby. The most important thing to remember is to be kind to yourself.
Spiritual Care Spirituality and religion can provide great comfort when people learn they have cancer. Oftentimes people turn to their faith (whatever that may be) to guide them through the illness. In some cases, people may feel that God/their god is punishing them somehow with the sickness or that they’ve been abandoned if they don’t get well. Most of us have some kind of belief system that can bring us solace. To emotionally and mentally sort through these issues, have a conversation with a trusted clergy member, priest, rabbi, chaplain, or palliative care physician or spiritual care specialist. The CHRISTUS St. Vincent Spiritual Care Team’s goal is to help patients maintain a healthy emotional and spiritual outlook throughout their treatment. To make an appointment with the Spiritual Care Team call 505-913-5731
A SIMPLE MEDITATION FOR YOU TO TRY AT HOME: Find a comfortable sitting position (or lie down). The body should be relaxed, but awake. Feel where the body feels supported, like your feet on the floor or your seat in the chair. Start paying attention to your breath. When your mind wanders (as it will, it’s normal for the mind to be busy), gently bring it back to the breath. You can count the breaths if you wish. On the exhales, count from one to 10. When you get lost, go back to one. *Start with just a short practice time, even five minutes of meditation has been shown to really support healing and a sense of well being. *
C.A.R.E. –71
Self-Care: Comfort & Confidence
Cancer treatments and their side effects may cause physical changes. Know that there are many ways to both look and feel better by taking positive steps to cope with this new physical appearance. Try not to let people talk you into something you don’t feel comfortable with. You are the one who will have to live most intimately with your hair loss, so you are the one who gets to decide what feels right for you in terms of your physical appearance. It’s your decision.
Weight
Skin
While some people lose weight during chemo, other treatments, such as steroids, may cause bloating. In both cases, opt for loose and unstructured clothes instead of tailored designs that might make you feel uncomfortable. If your face becomes puffy, try V-necks that elongate rounder faces. Crew necks and other round necklines will give the illusion of fullness if you’re looking thinner from rapid weight loss.
Both chemo and radiation increase your skin’s sensitivity to sunlight. If you’re undergoing chemo, your whole body will become sunsensitive, especially those areas that rarely see UV rays, like your scalp. Avoid exposure, particularly between 10 a.m. and 4 p.m., and protect your skin as follows: • Wear clothes that cover you, such as longsleeves and pants/longer skirts. • Invest in several broad-brimmed hats. • Use button-ups, scarves, shawls to cover your chest, throat and neck. • Always be aware when you’re in the sun – (for example, when driving, your left arm can be exposed to lot of UV). • Talk to your medical team if rashes form. They may be able to provide you with hypoallergenic lotion kits.
Nails Your nails are may become very brittle and dry due to treatment. Use rubber gloves when washing dishes and cleaning, and keep your hands away from harsh or drying chemicals such as bleach. Men: Keep nails short. Women: Let nails grow and lightly file them with an emery board no more than once a week. Use artificial nails or any nail polish remover that isn’t acetone-free.
Hygiene Treatments and cancer take the energy out of a person. It is important that some of the basic hygiene areas are taken care of (washing hands regularly, brushing teeth, washing face, showering, wearing clean clothes, etc). If any hygiene-related activity is difficult to do alone, ask for assistance from a family member or close friend. Handling these little things can contribute to your feeling more confident and comfortable.
C.A.R.E. – 72
FOR MEN: Get Nivea or Dove Care products, fresh undershirts, socks, pajamas.
FYI:
If appearance is a concern of YOURS put your attention on it. Otherwise, know that you don’t have to prove anything to anyone. Do what makes YOU feel most comfortable and confident.
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Hair Loss The most recognizable side effect of cancer treatment is temporary hair loss – or the change of color to white. NOT everyone loses their hair. Like all side effects, this is dependent upon the type of treatment one is getting. Why it happens: Chemotherapy attacks quickly duplicating [cancerous] cells. Healthy cells that control hair growth sometimes get caught in the crossfire.
FYI:
Headwear
Have sunglasses to help protect your eyes from the lack of eyelashes and Kleenex to help remedy a runny nose due to a lack of nose hairs.
Choosing a wig, beanie, hat or scarf is a practical step that can also be very emotional. It’s a good idea to enlist the support and company of a friend when you go shopping, get a haircut or seek to remedy this aesthetically.
From Those Who Know! – Take control of the situation. Cut your hair before the cancer takes it! It’s a great feeling to lose it on “your terms. – I never thought I would post a bald picture on Facebook. If I can do that, I can do anything! – Buy a wig before treatment begins so that it can best match your hair color and style. – Maybe losing our hair should be a sign of strength! It takes courage to go through this treatment and we should be proud of surviving the daily battle. – The day chemo “got real” for me was the day I was taking a shower and clumps of hair began falling out into my hands. Losing my eyebrows and eyelashes was a shocker and made me feel very self-conscious. – My aunt helped others to feel the best they could and embraced life and cancer in this way. – If you can get out of bed, try to shower. It will refresh you!
SPOTLIGHT MARY HELEN KELTY
I liked to dress up to go to appointments and treatments and always wore a smile on my face. The only time I cried was when I was losing my hair and my husband shaved my head. After that, I had fun getting and experimenting with different accessories like scarves and hats and getting another wig. I wasn’t going to be able to change anything so I just accepted it. That has probably been the worst part of the whole experience for me. I used to have so much hair…but, Hey! I’m alive!!!
To read more online about Mary Helen’s story, visit careguide.info C.A.R.E. – 73
treatments. In a supportive, safe and companionable group sessions, attendees learn about skincare, make-up, wigs and head coverings.
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PATIENT RESOURCE CENTER
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Look Good Feel Better® is a wonderful FREE program designed to help female cancer patients deal with appearance-related side effects of cancer and treatments. In a supportive, safe and companionable group sessions, attendees learn about skincare, make-up, wigs and head coverings.
These classes are given by licensed estheticians and cosmetologists who give their time and their skills to help women through their cancer journey. Everyone goes home with a free kit of beauty products. Join a session in 2017:
Dates: March 13 April 10 May 8 June 12 July 10
August 14 September 11 October 9 November 13 December 11
Time: 1:00 PM – 3:00 PM Look Good Feel Better, Santa Fe “The program allows you to be in a room with
others who will understand and support you. Please join one of our next sessions: 13 Dates: February Sharing the experience together, is something March 13 April 10 that I’ve seen build confidence in the May 8 June 12 July 10th (Santa Fe Hairtage Salon, participants!” - Dolores August 14
Look Good...Feel Better is a wonderful program designed to help female cancer patients deal with appearance-related side effects of cancer and treatments. In a supportive, safe and companionable group sessions, attendees learn about skincare, make-up, wigs and head coverings.
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Place: Residence Inn 1698 Galisteo St. Santa Fe, NM
December 11th
Time:
1:00 PM – 3:00 PM
Place: Residence Inn 1698 Galisteo St. Santa Fe, NM
To register please call: 505-262-6016 Registration is required
C.A.R.E. – 74
Sessions also available in Los Alamos, Albuquerque, Rio Rancho, Farmington, Hobbs and Alamogordo.
Visit: www.lookgoodfeelbetter.org for details
Besides the side effects from treatment, the body may have significant changes in appearance due to some kind of surgery.
RECONSTRUCTIVE SURGERY Dental care New Mexico Mission of Mercy Program *FREE* 2-day dental clinic in Albuquerque Handles every kind of dental work for those who don’t have a dentist, dental insurance, or the financial means to keep up with their dental work. (No questions asked.) September 21-23, 2017 Albuquerque Convention Center ** Clinic Days: September 22nd & 23rd | For men and women of all ages
This is a realistic option for many people who undergo surgery to treat cancer. Talk with your healthcare providers to understand your options and find out what types of reconstructive surgery are covered by your insurance.
PROSTHETIC DEVICES/ ARTIFICAL LIMBS Artificial limbs, called prosthetics, can replace many different body parts lost through surgery, and most insurance companies will pay for them. Talk with your surgeon and medical care team about options and new developments in prosthetics.
For more info: www.nmdentalfoundation.org Provided by
C.A.R.E. – 75
SOURCE: American Cancer Society
Our Mission When someone receives a cancer diagnosis, the patient and their families get quickly thrown into a world of complicated medical procedures, decisions and treatment options. For some patients, the diagnosis and treatment of cancer is accompanied with devastating financial and emotional effects. Our programs and resources provide help and hope to adult patients and their families to help them through this difficult time. It’s our way of trying to help these families focus less on their financial stress and more on their health and recovery. The New Mexico Cancer Center Foundation (NMCCF) is dedicated to supporting our patients’ non-medical needs during their fight against cancer. What does this mean to the patient? That if their co-pays and transportation costs have consumed their monthly budget, that the Foundation will step in and pay their rent, utilities, groceries or gas. Who We Are In 2012, we celebrated our Tenth Anniversary of helping cancer patients and their families. The New Mexico Cancer Center Foundation is a 501(c)3 non-profit org anization, guided by a board of directors and assisted by a large group of volunteers and advisors. Currently, the NMCCF serves patients with cancer or severe hematological disorders who receive care at any of the New Mexico Cancer Centers in Albuquerque, Gallup and Silver City. no K
NEW MEXICO CANCER CENTER 4901 Lang Avenue Northeast, Albuquerque, NM, 87109 wle
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New Mexico Cancer Center Foundation The Foundation is situated at the Lang Albuquerque New Mexico Cancer Center and provides a variety of unique support programs to patients, their families and the medical community. The Foundation is focused on helping to reduce the stress of cancer treatment through education, legal and financial counseling and by providing financial help to cancer patients and their families. We are grateful for the exemplary commitment of time and treasure generously given by each member. Patient Education Programs Patients who are battling cancer often find themselves battling difficulties on other fronts as well. Many patients must give up jobs, or have a family member who must give up a job. This brings great financial stress to families, which is why the New Mexico Cancer Center Foundation developed its Patient Grant Program. Through this program, patients may request help with rent or a mortgage payment, child care, transportation, groceries and other daily expenses. Funds also help rural patients pay for lodging or transportation costs to get treatment in Albuquerque or at one of our other centers throughout New Mexico. Funds go exclusively toward non-medical expenses and are paid directly to a third-party payee (mortgage company, landlord, utility company, etc.). VISIT THE NEW NMCC FOUNDATION WEBSITE: nmcancercenterfoundation.org (505)-828-3791 C.A.R.E. – #
Your Shopping List Among “the new normal,” for those living with cancer oftentimes means a new shopping list and ways to get everything you need; from medical supplies to groceries and food. Avoid multiple unnecessary trips to the grocery store by keeping a running list, in a prominent place, in the house. Add items as you run out of them so you won’t forget things.
FYI:
A % of your Santa Fe Smith’s purchase can go to the Cancer Foundation for New Mexico through their community partnership
Shop for Some of These Helpful Items Medicine Cabinet
FYI:
Ensure your health insurance is compatible with your preferred pharmacy, to avoid increased costs.
Kitchen
• Thermometer – to check for fevers • Latex gloves • Neosporin • Sanitizing antibacterial wipes • Band-Aids • Unscented moisturizing lotion • Airborne/Emergen-C – for caregivers to stay healthy • Hand Sanitizer – for Caregivers/guests • Sunscreen/Hat • Vaseline • Tissues and paper towels • Soft brush tooth brush • Kleenex • Sandwich bags — great for packing snacks • Plastic Water bottle(s) — find a couple ones that the person would like, and can easily fill up. • Blender — for shakes and smoothies FYI: • Trashbags & bucket — for bedside nausea ent Hospital St. Vinc Foundation will pay
Comfort
• Extra blankets/robe/pillow pharmacy costs of up • Compression socks to $1,500 per year for qualifying patients of the • Heating pad/throw for sofa CHRISTUS St. Vincent • A lap tray— for eating, reading, computer work Regional Cancer Center. • Winter gloves—will help keep hands warm with chills Ask your healthcare provider • Travel neck pillow—have comfortable car rides/naps/flights for more information. • A framed picture of them with their loved ones – put it bedside
Getting a Disability Placard You can apply for a Parking Placard for Mobility Impaired Individuals from the New Mexico Motor Vehicle Division. Download and print the form, from the website at www.mvd.newmexico.gov/ forms.aspx or pick it up at the local Motor Vehicle Division office. Have you/your doctor complete the application and return to your local MVD.
C.A.R.E. – 78
Resources... SANTA FE PHARMACIES AND MEDICAL SUPPLY LOCATIONS Albertsons • Christus St. Vincent • CVS Del Norte Pharmacy Lovelace Medical Center Pharmaca Sav-On Drug • Smith’s Target • Walgreens • WalMart MEDICAL SUPPLIES ONLY Preferred Medical A&R Medical Supply
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Get your groceries delivered to your home Mondays, Wednesdays and Fridays $10 fee + tax OR PICKUP KAUNE’S will gather and have your groceries waiting for pickup $5 prep fee, + tax.
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Caring for the Caregiver A caregiver can be a spouse, child, relative, good friend or hired help. Regardless of who a caregiver may be, caring for someone with cancer means big changes in their lives. Know that every situation and person is different. There is not a “one size fits all” approach. Caregiving isn’t just about picking up medicine, driving to appointments, or reacting to treatment-related side effects. Instead, it truly is about doing everything you can to help the person living with cancer have a better daily life. Physically, emotionally or mentally, you are “on-call” to meet those needs.
Your “P.E.P.” Will Be Tested... PATIENCE – Take deep breaths and be patient with your loved one, others who might not understand your role and yourself. ENDURANCE – You want to be in this for the long haul; stay the course and find energy sources to keep you fueled. PERSPECTIVE – Keep a positive attitude and a healthy view of your situtation. Make memories together; it will improve quality of life for BOTH of you.
A Kit Fit for a Caregiver There is nothing that can truly prepare you for your role. There are, however, certain “items” to “pack” for a more manageable experience: KNOWLEDGE about your loved one’s cancer. Inform yourself; it will build confidence in your position. Ask questions and take notes for the patient. POSITIVE PEOPLE: Those with negative, dramatic or seemingly selfish tendencies just have no place in your life anymore. Invest in those who invest in you and save your energy for those that bring you joy, comfort, and confidence.
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RELAXATION TECHNIQUES: Everyone relaxes in different ways, whether it is reading, going for a jog, writing or even binging on your favorite TV show/movies. REWARDS FOR THE LITTLE VICTORIES. Were you and your loved one able to do something you enjoyed? Did you make it through a day at work without snapping back at someone? Did you navigate through a difficult discussion or doctor’s appointment? Recognize these accomplishments and be proud! C.A.R.E. – 80
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Sharing the Load
A CAREGIVER’S “TO DO” LIST:
There is no such thing as a “super-caregiver.” You are already a hero by nature of what you are doing. No need to make it a harder job than it has to be. Don’t be afraid to accept help from someone. Let’s say that again…DON’T BE AFRAID TO TELL PEOPLE YOU NEED HELP. If people are offering, they are willing. Utilize their willingness to alleviate some of your load. Even if their assistance makes it just an ounce lighter, that’s less you’re carrying. And that’s an opportunity to try and utilize if deemed necessary or if the opportunity presents itself. Respite care is up to five-day periods of time, either in a hospice facility or in a nursing home or hospital. This allows friends and family some time away from caregiving.
With so many responsibilities, it is difficult to keep everything straight. Try to “accomplish” these other very important “tasks”: 1) COMMUNICATE honestly, clearly and frequently with the person you are caring for. Sharing your feelings can be rewarding for both of you. 2) RELIEVE STRESS with exercise, writing, yoga, meditation or hanging out with positive people. 3) BE KIND to the person living with cancer, to those around you who might not understand your role and especially to yourself. 4) STAY FLEXIBLE: your loved one’s cancer will knock you off balance if you are committed to one “stance.” Stay on your toes as the situation continues to change. 5) BORROW STRENGTH whether it be literally or figuratively. Lean on others when needed. Strength can come from a personal friend, a support group or a professional counselor. The source is irrelevant. Just seek it out.
Caregiver Comraderie TOGETHER SUPPORT GROUP: A GROUP FOR FAMILY & FRIENDS OF CANCER PATIENTS Discuss the unique needs of the caregiver and those in the life of the cancer patient The group is provided by Cancer Foundation for New Mexico and facilitated by Ronni Levine, Liscensed Marriage and Family Therapist Every Tuesday, 11- 12:15 p.m. at the Cancer Foundation for New Mexico office: 3005 S. St. Francis Dr., Suite 3B, Santa Fe *FREE* Contact: Caroline Owen, 505-955-7931 ext. 3, caroline@cffnm.org
CAREGIVER SUPPORT PROGRAM A free program provided by Cancer Services of New Mexico that matches caregivers with volunteers who have been in the same role. |info@cancerservicesnm.org | 505-259-9583 Things I Wish I’d Known: Cancer Caregivers Speak Out by Deborah J. Cornwall Caregiver.com| Caregiving.org sharethecare.org | cancercare.org
FAMILY CAREGIVERS SUPPORT GROUP Meetings are on the 2nd and 4th Wednesdays each month, 2-3 p.m. The group is sponsored by Comfort Keepers and facilitated by Eileen Joyce, Certified Coach and Grief Recovery Specialist. Contact: Eileen Joyce 428-0670, or eileenjoyce@ comfortkeepers.com, to reserve your place and get directions to the Santa Fe location C.A.R.E. – 81
“Side Effects” of a Caregiving Role • Your priorities have changed drastically. • You are less carefree. • You go on more emotional rollercoaster rides than before. • You have a hard time sleeping. • You become more irritable or sensitive. • You face financial issues from not being able to maintain a full-time job or paying for more expenses. • You become closer to family and friends. • You are more tired and get sick more often (“caregiver fatigue”). • You may learn to value life and the people in yours more. • You may seem more “reserved” or “removed” from those who know you. • You might have an increased level of insecurity in areas such as how you handle your stress, how you are juggling your life, your performance at work/in roles, managing your relationships, and mostly in the way you are caring for your loved one.
FYI:
Caregiving is a cyclical journey. Old emotions and issues may return unexpectedly.
“I’m Not Needed Anymore. What Do I Do?” Let it be known that this time will actually never exist. Will the WAY you are needed change depending on the health and condition of your loved one? Absolutely. Sometimes you may need to amplify your aid; other times, your assistance isn’t as much of a necessity. Regardless of where you are on this continuum, they will always need you, in some form, for emotional and/or mental stability – to simply to be there for them.
CONFLICT WITH YOUR LOVED ONE When people don’t feel
good, they might not be aware of how they are approaching you. Their bodies are tired and their filters are worn down. Hurtful or seemingly ungrateful things might be muttered. TRY not to take it personally or feel unappreciated. If your loved one isn’t treating you well, it’s okay to say, “I’m going to leave the room now. Because this doesn’t feel good right now. But I will be back.” Take that frustration and; dump it on a trusted friend/pedal it out on a treadmill/slam it across the tennis net/bake it with a batch of cookies/ pour it into a work project. A third person may have to be consulted to mediate the dispute. The sooner any disgruntled feelings can be resolved, the better experience you both will have.
CAREGIVER GUILT A caregiver’s
guilt is real, but it doesn’t have to be common, if you learn to reframe what you are doing and accept the very human emotions that come with it. Oftentimes caregivers feel unsettled if they do something unrelated to the one they are
caring for (and possibly enjoy it). Know that you SHOULD (and oftentimes they want you to) take a breather every once in a while to refresh. Embrace self-care without guilt. Caregivers also may get angry at themselves if they show frustration with the situation or say something insensitive in front of their loved one. Yes, these things may make you feel terrible. You may feel guilty. Embrace these human emotions and learn to release your tension in other ways so that your tolerance is high around the one you are caring for. But know that cancer may be a situation that angers you – and that’s okay.
“WHAT IF I MESS UP?’ No matter
what you do, you’ll likely come to point(s) where you feel you have failed your loved one in some way. Doing your best doesn’t exempt you from feeling that you could have done better. Find a way to forgive yourself and move on.
C.A.R.E. – 82
“Early Detection” FOR A CAREGIVER It becomes unhealthy to allow bottled up feelings and frustrations to go “untreated.” If you feel unsettled or angry, then take an important step and seek out a professional (social worker, counselor, therapist) who will listen and help. Don’t wait until you have emotionally/ physically/and mentally shut down – lashing out at yourself or others. If you can’t shake these uneasy feelings or feel like you might possibly be anxious or depressed, utilize resources that are available to you. CHRISTUS St. Vincent Counseling Support: 505-913-5731
From Those Who Know! –Not having control over some aspects of the cancer, results of scans or reactions from minute-to-minute is hard to embrace. Accept that fact early on so as not to get too frustrated throughout the process. You can’t “fix” their cancer. The sooner you accept being powerless and that lack of control, the more energy you can use to put towards things that do matter. – LISTEN. Don’t force one you love to do anything. Being overbearing will help no one involved.
– You just gotta have that inner will and keep your own life in perspective. – Do things you like to do if you can. – People aren’t mind readers. You have to tell people what you need. – EDUCATE YOURSELF — be involved. You probably don’t have a medical background so learn about the medicine. – Be okay with sharing your emotions even with your loved ones. They know you are human.
– Celebrate the little victories. – Show emotions. – Take their cue: they’re the one fighting. – Say, “I need five minutes.” Have time for yourself if you can.
– Stay on top of things and be organized. It’ll make you feel better and somewhat in control in an uncontrollable situation.
– Don’t feel like you shouldn’t accept help.
– Make your loved ones feel like they did before they got sick.
– Focus on what they still can do/qualities they have maintained, not on the parts of them they’ve lost.
– Stay productive and healthy so that you can maximize your support for your loved one.
– Make an appointment to hang out with yourself every week.
– Sometimes you know what’s coming around that corner, and sometimes you don’t – so it’s easy to feel lost or scared.
– Keep your doctor’s appointments. Truth is, you are worthless to your loved one if you aren’t managing your health properly. – Treat patients with respect. Let them keep their dignity. Don’t talk to them or treat them like they are children.
– Don’t abandon your hobbies. – Remember that they are a human first, everything else second. You are scared too – but make every effort on their behalf.
C.A.R.E. – 83
“Be sure you are taking care of yourself.”
Keep Your “Tanks’ Full Imagine that within yourself you have five distinct “tanks” with five distinct ways to fill them. Working for balance in these five areas will help you stay healthy and on track: 1) Physical — Exercise, get enough sleep, get a massage and take care of your body.
Caregivers hear, thismany times from others. However, it may be hard to know what that even means. In actuality, “taking care of yourself ” means something different to every caregiver. Only you know what it means to make yourself fulfilled and at your best. Sometimes you might have to think about what makes you happy has changed. Do some reflection. ASK YOURSELF: “When do I feel at my best? “Who are the positive influences in my life?” “What did I enjoy before I was a caregiver? In one way or another you should still be able to do those things, even if it is a revised version.
2) Emotional — Be realistic about feelings and share them with others who are supportive. 3) Mental — Logically and positively approach situations with a calm mind. 4) Spiritual — Maintain a sense of peace by meditating, praying or going to church. 5) Personal — Put some fun in your life — hang out with positive friends, keep up hobbies, play sports or games, watch movies, take a quiet walk, or simply do things you enjoy.
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Talking with Your Child
Communicating your diagnosis to family members is a crucial yet oftentimes difficult part of beginning your cancer journey. The challenge becomes increasingly difficult when you’re trying to navigate the discussion with your child[ren]. Children of ANY age will be affected by a parent’s diagnosis. No matter how old your child is, young or adult, cancer raises the fear that you will leave them and their family. It’s important to address this fear and let them know about any plans that have been made.
Children and Cancer It’s important to talk about your situation early, and as often as necessary, so your child’s imagination matches the reality. Children are quick to sense tension and stress in the family. Calm conversations about the facts can help each child understand what is happening. Children understand more than the adults in the family think they do. They usually have a fairly good idea of what is going on around them; not sharing honest information with them only cultivates fear and anxiety. Let your child know that some changes may be necessary. Your child may see you crying or upset from time to time. These are good times to let them know that cancer is a scary disease and that it’s okay to have strong feelings about it. It’s also a good time to reassure them that the family will work together to handle it. It creates confusion for children of any age to overhear conversations with no explanation. Grandchildren They can be affected by a grandparent’s cancer. So know that your child is trying to navigate through that, along with their own feelings. Talk together about the best approach for them.
INVOLVING OTHERS
A parent’s first inclination in time of crisis is, “I have to handle this.” Sometimes it is helpful to call in some outside assistance: • Use a social worker/counselor to help with specific phrasing for any conversation you need to have with your kids. • Have an outside family member or close friend step in and be more involved with your children/offer another source of support. • Ask someone close to your child (teacher, close friend, coach, etc.) to be “on-call” to step in if needed.
C.A.R.E. – 85
Multiple Children If you have more than one child, talk to each one individually so that the message and approach may be tailored to their maturity and level of understanding. Involve all children and give them information as you see appropriate based on what they need to each hear. All children need the following information: • The name of the cancer, such as breast cancer or lymphoma • The part of the body where the cancer is • How it will be treated • How their own lives will be affected • Information on your decreased availability due to appointment schedule • Increased housework by other members of the family • Physical/emotional changes that they may witness in their parents due to the illness. Brace them for this early as they/you might not feel comfortable to discuss them as they are taking place.
Approach/Things to Consider at Different Ages: Age 1-8
Age 9-18
Age 19-23
Age 24-35
Age 36+
~Speak simply about the diagnosis~ “The body is made up of lots of different parts. When someone has cancer, it means that something has gone wrong with one of these parts and it’s stopped doing what it’s supposed to do. Part of the body is no longer normal.” ~Go into more depth about the cancer – and the changes it’ll create~ • Information on your decreased availability due to appointment schedule • Increased housework by other members of the family • Physical/emotional changes that they may witness in their parents due to the illness. Brace them for this early as they/you might not feel comfortable discussing them as they are taking place ~Involve them on details of your health~ • May ask more technical questions based on experience in life or stories they’ve heard • May be more difficult to monitor their coping mechanisms due to geographic issues (i.e., college, job locations) ~They understand more, so involve them in details of your health~ •M ay be more difficult to monitor their coping mechanisms due to geographic or responsibility issues (i.e., career, spouses/families) • Be honest about how they can help and what the situation looks like ~Collaborate with them on helping manage the diagnosis~ • May be more difficult to monitor their coping mechanisms due to geographic or responsibility issues (i.e., career, spouses/families) • Be honest about how they can help and what the situation looks like • Give more responsibilities to them to help manage your spouse/other children (if applicable)
Discussing Another Family Member’s Cancer
Sample Conversations: “As you have been able to notice, your mom hasn’t been feeling good. She is sick actually. She does have cancer. Now, whereas we aren’t 100% sure how it is going to go or end, what we do know is that we will all be focusing on the blessings along the way. I’m sure you have a lot of questions. We are both here to help answer those, as best we can.”
Setting a tone
• Be patient and remember this is a process. Give small amounts of information at a time. • Use words appropriate to the child’s age and vocabulary. • Allow them to ask any questions they want. • Ask them if there was anything that you said that scared them or didn’t make sense. • Listen to their concerns. • Let them feel included in your process. • Reassure them of your love for them.
When Dealing with an Aggressive Cancer: Be honest “Will you get better?”
“My cancer is a hard one to treat and I’m going to do everything I can to feel better. I don’t want you to worry about the future right now. I’ll tell you if anything changes and I promise to always tell you the truth. I want you to ask me questions and let me know if you can’t stop worrying. We’ll work on that together.”
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SPOTLIGHTS DEB KELLER
When I found out that I had cancer, I told my son, Weston, that we were going to do everything possible to make sure that we got rid of it if we could. I continually reassured him that I would work to get healthy and strong again. I explained the treatments that I was having, in ageappropriate ways, so that there was no scary mystery. When kids aren’t sure what is going on, sometimes they come up with imaginations that are scarier than reality. LETTING HIM HELP So he wouldn’t feel powerless, I made sure to come up with things for him to help me with that were not overwhelming for him. I wanted to make sure that he did not feel that he needed to take on extra responsibility, though. I wanted to make sure he knew that I was still the grown-up and that his needs would be met. TEACHING A LESSON Having cancer has taught me to be more honest about when I need to rest and when I need to ask for help. I hope that this experience has modeled for my son both self-care and caring for others.
WESTON KELLER WHAT I WISH I WOULD HAD KNOWN:
Resources GERARD’S HOUSE/STEPPING STONES Support program for children ages 3-21 who have a family member living with a lifethreatening illness; FREE Contact Gerard’s House for more information: 505-424-1800 | www.gerardshouse.org info@gerardshouse.org CANCERCARE FOR KIDS Online support program for teens with a family member with cancer www.cancercareforkids.org | 800-813-4673 KIDS KONNECTED For children and teens whose parent has cancer or who have lost a parent to cancer www.kidskonnected.org | 800-899-2866 KIDSCOPE Online materials and virtual comic book for children about chemotherapy www.kidscope.org CANCER SERVICES OF NEW MEXICO offers *FREE* Family Cancer Resource Bags to help parents discuss the cancer journey with their children. Materials are targeted for children aged 4-12 as well as for teenagers. 505-259-9583
I wish someone told me that cancer wasn’t always fatal. That would have eased a lot of my stress because before, I just kept thinking to myself,”Is mom going to die?” FAVORITE MOTHER/SON MOMENTS I love it when we go to the movies or on bike rides – cruising through our neighborhood together. We love the outdoors, so it is great when we go camping. TO OTHERS Stay hopeful. If you give up, you have already lost. TO MOM Thank you mom for your never-failing sense of hope and courage. You have been through so much, yet you are determined to keep going. You perpetually do everything it is humanly possible to keep us moving forward. I love you, mom.
To learn more about Deb & Weston’s story: visit careguide.info C.A.R.E. – 87
Viewpoint of Your Child The feelings and reactions of a child of someone with cancer may vary based on his or her age.
Some Things Children Struggle With: Age 1-12
Age 13-18
Age 19-23
Age 24-35
Age 35+
• Understanding all of the implications of cancer • How different you look/the way you look to others and how they stare • Wondering if you’re going to get better • Having a good grasp on all of the impact/implications cancer has on the family and potentially on them • Wondering if you’re going to get better • What they’re supposed to do/act like through your battle • Deciding the balance of college/job and involvement in your life • Curious as to what the future will look like/if you’re going to get better • What questions to ask • Deciding the level of involvement of your diagnosis (being caregiver, moving closer, making career or financial adjustments) • Wondering if you’re going to get better • Managing the other parent’s emotions • The management or thought of you not being there for milestone moments (i.e., wedding, graduations, career moves, time with grandchildren) • Balancing career/family of their own and care for you/other parent • Managing some of the practical things if both parents are unable to do so • Managing the other parent’s emotions • Deciding the level of involvement of your diagnosis (being caregiver, moving closer, making career or financial adjustments) • The management or thought of you not being there for milestone moments {i.e. wedding, career moves, time with grandchildren} • Questioning their own health and the cancer’s genetic implications
SPOTLIGHT KENDRA KENNEDY BIAVA
My mother’s decision to have a mastectomy at the age of 40 has also taught me about vanity and love. She embraced her new body and taught my sister and I first hand that different is still beautiful. I, of course, also give my father the utmost respect for teaching us the definition of true, unconditional love. Most of all my mother’s diagnosis taught me and my family the value of life and faith. Her unending belief in the power of prayer and love of God, I believe, brought her through her recovery.
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When my mother was affected, I was terrified she was going to die. I remember her doctor sitting down with me and drawing what cancer was in a kid format so I would understand. I think reassurance is key for kids. I was so young that I didn’t care about details – all I wanted to know was my mom was going to be okay. I remember my mom showing us her pinkie fingernail in reference to the size of the cancer.
To read more online about Kendra & her mom’s story, visit careguide.info
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From Those Who Know!
The Candor of a Child
Embrace the fact that it REALLY SUCKS that your parent has cancer. 1. Take all of your pent-up emotions out on your local pharmacist when picking up your parent’s prescriptions. You have to release that stuff somehow, right?!. (I’m kidding. Kind of...) 2. Prioritize yourself, even when you don’t want to. Your parents will be grateful for that. Also, know that showers are magical. 3. Allow yourself to feel all the crazy, mad, sad, confused and insane emotions all at the same time. There is no way to fully prepare for this. 4. Be okay asking for help. You will need a support system of family and friends; don’t be shy about asking for them. While your situation is unique, there are people who have gone through similar experiences and would love to be there for you.
5. Two words: Coloring books.
FYI:
Regardless of age, children just want to continue to share milstone moments and special memories with their parent(s).
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Spousal Relations Cancer affects every relationship in one’s life. A spouse/partner might be one of the people most affected by a diagnosis. For them, it means big changes not only for your life but also for life together as a couple.
Role Reversal Due to physical challenges each person’s responsibilities may be altered. Whether that means who goes shopping for necessities, who prepares dinner, who picks the kids up from school or who manages certain financial or housing issues: they ALL may be impacted in one way or another.
FYI:
Help your spouse help you (and his/herself ) by making a list of resources and how to do certain tasks. This will help them feel comfortable handling some of those things.
Have open communication about what needs to be done and who should do it. There are tasks that you might WANT control. If you feel up to it, you are encouraged to do so. However, you should never do something that might be detrimental to your health just because you always used to. This is where spouses must step in and start to handle the things they didn’t before. So it may be time to equip yourself with the materials and the knowledge to do those things and to teach and empower others in their new duties.
Responsibilities That Can Be Affected: Cooking Financial management Driving Household chores Grocery shopping Parenting duties Taking care of the pets Communication with friends/family
FYI:
SOLO ACTIVITIES Getting used to/ feeling comfortable attending some of life’s events without your loved one for a while could affect you. Know that it is still something that must be done for a sense of normalcy. As long as you’re going through it together, you’re growing and making progress.
Try to understand in what ways your spouse feels most loved and supported. Ask if you have to. Then seek ways and make efforts to deliver on those gestures.
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SPOTLIGHT LOIS AND JERRY RAEL BEING TOGETHER:
WEDDING: June 20, 1981 HONEYMOON: Florida & Colorado
We have approached Lois’ cancer together. Coming up with game plans and listening to each other often. But truthfully, cancer isn’t our only focus. There are days where we don’t even talk about it. Besides spending time with our grandkids, going for walks is one of our favorite things to do together.
ABOUT EACH OTHER LOIS: My husband never gives up. He is constantly supporting me and by my side.
JERRY: My wife’s outlook is so phenomenal. Here is this woman who undergoes treatment and
she goes to the cancer center and she’s a friend to EVERYONE. She makes other people feel so special. It makes me feel good to do things for her.
ADVICE TO OTHER COUPLES: JERRY: Listen to the needs of each other and you start to learn how the other one is thinking.
Don’t get ahead of yourself. I used to look six months in advance– now I just focus on the day. One day at a time. LOIS: You both really need to ‘step up to the plate.’ It can’t be all of him, or all of me putting in the effort. It’s okay if things change and if you aren’t able to do everything anymore. Our faith has never eroded.
OVERALL: LOIS: I see this as a journey – it’s a pilgrimage, and I’m not worried. What God wants. God wants. JERRY: I’m going to continue to be right by her side. Sure she has cancer, but we are living on. I just have that real, pure love for this woman... 37 years married, and it’s just getting stronger.
“We are going to continue to be there for each other and enjoy every day...together. LIFE IS GOOD” To read more online about Lois and Jerry’s story, visit careguide.info
“
Thinking back on July 8, 2015, I still get goose bumps. That was one of the scariest phone calls I have ever received. I frantically called family, and had to start making decisions that I could have never imagined making after only two months of marriage. The four days that Scott was in a coma were the longest days of my life. The day that Scott was awoken was such a relief, especially when the first thing he did when he woke up was reach out and grab my hand. Brain cancer has for sure delayed many of our milestones in our marriage and caused some struggles. Unfortunately, we haven’t yet been able to take our honeymoon; buying our first home has been delayed, as well as starting a family. Our marriage did not start off as the “fairytale” that I had hoped for, and it took me a while to let that anger and frustration subside. In the past year-and-a-half I have learned to appreciate so much. The struggles that he and I have gone through so quickly in our marriage together have brought us so much closer. We appreciate each other and the little things so much more than we did previously. I still cannot believe how quickly he recovered and how well he is doing. My husband is such a strong man, and I am so incredibly proud of him.” –COURTNEY
“
The diagnosis, brought my wife, Courtney, much closer to me. She has made this battle and journey so much easier. She has always been by my side through thick and thin, no matter the outcome. She has been my rock, just as I would be her rock. My wife has been here with me through it all, and I know she will continue to be, as I win this battle.” –SCOTT To learn more about Scott’s and Courtney’s story: visit careguide.info C.A.R.E. – 91
Communication is Key Just like everything else up to this point in your relationship, you’ve approached joys and trials together. Cancer isn’t any different. If anything, it is a time that calls for some of the most important collaboration a couple has ever done.
FYI:
Being honest with your partner about your feelings is always important.
CANCER AND SEX: LET’S TALK ABOUT IT
Cancer takes a toll on many aspects of a couple’s life. The hormonal and overall physical changes that men and women may experience through cancer can highly affect the sexual dynamic between a couple. If sex was a part of the relationship before cancer, acknowledge how it may be affected by the diagnosis.
ADDRESS THE ISSUE
1) TALK TO YOUR SPOUSE. How is it affecting each of you? What questions do you have for each other? Communication between partners is the most crucial part of finding solutions for you both. It doesn’t matter who brings it up as long as both are open to have an honest conversation. 2) Use your medical team as a resource. Ask your oncologist, nurse practitioner, nurses, palliative care physician, doctor of oriental medicine, or social worker about concerns you have. If you aren’t satisfied with the level of guidance you received from one professional, talk to someone else. Keep asking! It’s an important issue and you deserve answers. 3) Discuss your concerns with a trusted friend/ someone who may understand/can help. The couple may need to seek alternative ways to “keep the spark” in the relationship. Intimacy can take many forms. Seek other ways to feel intimate with each other and redefine what it means together.
From Those Who Know! – Tell each other how you’re feeling. – Be sensitive to their needs. – Ask open-ended questions. – Develop a game plan of how you are going to approach this. – Make chemo days into a date and go do something together after. – Allow the situation to bring you closer, with more appreciation for each other. – Cancer is a part of our life now, but is isn’t our life. There are many days that we don’t even speak of it. There are other days where it worries us. But we manage to get through those days with teamwork.
– Teamwork is what we’ve had for many years and will continue to have through this journey together – Don’t guilt your spouse about how tired you are. It’s okay to be tired together. – Living every moment in thanksgiving of our life together is what gets me through each day—one day at a time! – Phrases like “you are so beautiful” or “you’re handsome” will go a long way to your spouse, who may feel insecure duting this time. Affirmation in this way helps build confidence. – The spouses have to be patient, because the side effects from the treatment are just overwhelming. – A good sense of humor is helpful.
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A Young Diagnosis When a child, teen or young adult is diagnosed with cancer, parents and other adults involved in their daily life are often the keys to how the family copes with the diagnosis. Realize that you may never know what caused the cancer. Learn as much as you can and move forward by focusing on the child’s or young adult’s future.
FOR CHILDREN: Their Diagnosis
FOR PARENTS: Changes to Expect
At any age it is extremely difficult to hear that your body isn’t working at its best, especially when you know what you and your peers are capable of Children and teenagers often respond to news of a cancer diagnosis with a range of emotions that can reflect those of their parents. INFANTS-YOUNG CHILDREN v Give simple explanations of what’s going on. v Do not tolerate aggressive behavior and continue to teach them to express feelings in ways that don’t hurt them or other people. v Create opportunities for physical activities. v Reward good behavior for cooperation with tests and procedures – discuss with social worker. TEENAGERS-YOUNG ADULTS v Include them in all discussions about discussion and treatment planning. v Be willing to tolerate some reluctance to share thoughts and feelings. v Allow them to talk privately with professionals. v Offer assurance that the crisis will be managed.
FYI:
No matter ho w old a child gets, th eir will always be parent affe by their diag cted nosis.
vN eeding to take time off from work/adjusting school schedules and communicating with teachers v S igning treatment consent forms and making important decisions vN eeding help to care for other family members vF eeling shock, disbelief, fear, guilt, sadness, anxiety and anger SCHOOL-AGE v Encourage them to identify their feelings with words. v Offer repeated assurance that they did not cause the cancer. v Pay attention to unasked questions and pay attention when they discuss fears and FYI: concerns. Be attentive to your children’s reactions and seek advice fro m the cancer care team about finding extra counseling support if needed. WHEN IT’S YOUR BROTHER OR SISTER (ANY AGE)
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v They may have trouble concentrating on school/work. v At any age, siblings may deny or minimize their responses or emotions because they don’t want to add to their parent’s distress. The older one gets, the more they want to be involved in their sibling’s journey and support them and their parents.
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SPOTLIGHT ASHLEY AND MICHAEL UHL
In December 2016, at 25-years-young my big brother, Michael, was diagnosed with testicular cancer. It came as a shock as he’s the most active person I know. The journey has been hard on us all and we couldn’t have stayed as strong as we are without the incredible support from friends and family! It’s been especially hard living eight hours away from him while working full-time. I’d give anything to be there for him every step of the way or take away some of his pain. However, knowing how many people are praying for him and supporting him comforts my heart. This life we have is a gift and seeing someone go through something as terrible as cancer really puts things into perspective. Family truly is everything. TO MICHAEL AND OUR PARENTS: You’ve shown so much strength throughout this difficult time. I know you have a long road ahead of you, but see how far you’ve come. 2017 will be your year. Mom and Dad – thank you for your endless love and support. I know this has been just as hard on both of you! And mom, for showing us that nothing is impossible by being the inspiration Michael needs to becoming a cancer SURVIVOR, just as you did 17 years ago. I love you all! To help support Michael and his family with finances for his current treatments,
visit careguidehelpmichael.info
Respond Quickly
CLASS & CANCER: MANAGING SCHOOL THROUGH IT ALL
The option and right to a second opinion is always there and important to explore if parents have doubts.
Even though the child’s health is top priority, learning is something that they should continue to do for a sense of normalcy. Take a few steps to work through this: • Talk to the school’s principal about getting a tutor if the child has to be at home. • Gather materials from your child’s school and work with him or her. • Look into homebound or hospital teaching if those are options.
Sometimes, however, parents have so much trouble believing the diagnosis that they simply are dissatisfied with any news or plans they hear. Once a diagnosis FYI: is confirmed, it’s important to Get connected with remember that long a child life specialist delays may harm the in order to have overall chances of appropriate care and responding well to guidance for your child. treatment.
Resources SuperSibs – Alex’s Lemonade Stand SuperSibs, a program of Alex’s Lemonade Stand Foundation, is dedicated to comforting, encouraging and empowering siblings during their family’s battle against childhood cancer so these children and teens can face the future with courage and hope. alexslemonade.org 610-649-3034 U27 Cancer Survivorship Group for Adolescents and Young Adults Under 27 Contact: 505-255-0405
Stepping Stones Support Program for children ages 3-21 who have are living with a life-threatening illness FREE Contact Gerard’s House for more information: 505-424-1800 gerardshouse.org info@gerardshouse.org For more information on cancer in children: cancer.org or 800-227-2345
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Source: American Cancer Society
Family Dynamics Cancer, at any stage, will spread to the entire family...and all will feel the impact. Every family is different, with many variables that need to be considered when trying to navigate through a loved ones journey. A diagnosis introduces many structural changes in the life of the patient, family and friends There needs to be discussion about coping with the life changes cancer brings and its impact on the family. For Children: Dealing with the Diagnosis
For All in the Family: Dealing with the Diagnosis
• Needing to take time off from • Infants, toddlers, children and teens will each respond work differently to their cancer • Signing treatment consent diagnosis. Be attentive to forms and making important their reactions and seek decisions advice from the cancer care • Needing help to care for other team about finding extra children in the family • Adjusting school schedules and support. communicating with teachers to ensure a healthy return to No matter how close the classroom you are to the person • Feeling shock, disbelief, fear, with cancer, you will guilt, sadness, anxiety and never know all that anger they are experiencing or feeling.
• S eek comfort from other family members and friends •A sk questions and get answers from the medical team •L earn about the short and the l ong–term effects of the recommended treatments •L earn how other parents in your situation have or are coping • Take time for yourself and find healthy ways to release your anger and other emotions • Involve others to get support •G et help from community sources
For Adults: Changes to Expect
House Rules
It’s important for all immediate members of the family to be on the same page in the diagnosis and set expectations for themselves and the *situation before them
1. W e will all make the one with cancer our focus to the best of our capabilities 2. We will all do what we need to do to keep ourselves healthy 3. We will communicate our feelings to each other/trusted friends or a professional 4. We will surround ourselves with positive and supportive people & utilize resources 5. We will do our best to adjust to the new “roles” and help support each other in their lives 6. We will respect & not try to change each other’s coping mechanisms & communications styles (unless they are detrimental)
C.A.R.E. – 95
7. W e will have a mature, calm conversation- free of accusation or hurtful words if we disagree 8. We will apologize if we take out our frustrations of the situation on each other 9. We will put our own preferences aside/let bygones be bygones on holidays/if our loved one has a special request for us 10. We will forgive anyone who doesn’t adhere to these rules and keep focusing on the one living with cancer *It is understood that family dynamics can interfere in what we are trying to achieve in caring for the patient.
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Family Game Planning First and foremost, once the news of a cancer diagnosis the family needs to decide who will be the primary caregiver(s). Setting that from the beginning will help further discussions of how everyone else will be stepping in will take place. “Let’s do this, let’s get this started, we are ready.” If young children are involved and it is a parent’s diagnosis it’s important for the other parent to step in and ensure your children are taken care of. The “tackle head-on together” approach will continue to play a vital role in the cancer journey especially when it comes to who you are going to tell/what/ when. Talk to your caregiver/loved ones, dissect your visit/information and decide what you are going to share with others. This way there is one consistent message to all and a plan on how things will be communicatied.
SPOTLIGHT CHERYL ODOM I’m five years out of a Stage IV diagnosis. Through it all, the best thing for me was when my son and his girlfriend (at the time) moved from California to help take care of me. I know that this must have been very hard for them. They have been married for three years now and our relationship has grown so much stronger, due to the trying times we faced together through my cancer experience.
Cheryl and Family
Impact on a Family Financial Practical
Emotional
Distance
Treating cancer can put a huge strain on a family’s financial situation. Family members should seek out solutions. It is helpful to assign roles to willing family members and friends so that there is a clear understanding of duties each week. This helps to level out the burden of care, especially if people in the family live afar. Communicate. Seek help from a professional therapist, a support group, or clergy to facilitate communication especially about painful and difficult topics. There are ways to make your loved one feel cared for from miles away. It’s a matter of how much responsibility you want to take on potentially. Between text messages, skype, pictures of activities going on in your life etc- and staying in touch with the caregiver (family member) can make the miles between you and the situation a nonissue.
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The
RHONA S. LEVINE
MARRIAGE AND FAMILY THERAPIST
As a Licensed Marriage and Family Therapist, I find that through the life cycle families experience many different situations and stressors, and illness is one of them. Usually the dynamics that existed in a family prior to the illness are there only heightened by the gravity of a cancer Caring for a person with cancer is a journey for which no one is prepared. diagnosis. “We will all make the one with cancer our focus to the best of our abilities” In working with caregivers, friends and families of cancer patients, I have found that this statement is often interpreted as “I have to drop everything to take care of the patient.” This leads to feelings of helplessness, inadequacy and is
Expert is
IN
often impossible to fulfill. It becomes especially difficult when the cancer patient remains sick for an extended period of time. It also makes the caregiver feel guilty for engaging in self care which is essential. It’s important for everyone in the patient’s life to feel like they used to. In other words facilitate an environment that still allows; children to play, parents to mentor, and young adults to have a social and professional work life. As a family, protect the loved one away from negative or hurtful people as much as possible Talk to your loved one about death and what it means to that person. It’s healthy to have a discussion about difficult topics.
Doesn’t Change Everything... Cancer flips worlds upside down and there are many changes that can come along. Some things, do however, seem to remain the same amongst family members. Coping mechanisms–However people dealt with grief in the past they most likely will continue those habits. If one can recognize and identify exactly how they deal with crisis in their lives, their reactions to the diagnosis might make more sense, bring perspective, and allow them to deal cope healthily.
Meet the “Coping Family” Members in the family might each take a different “role” when it comes to how they deal with the diagnosis: “The serious one” “The sentimental one” “The responsible one” “The disengaged one” “The helpful one”
“The sad one” “The poor me one” “The funny one” “The I don’t want to talk about it one”
“The mad one” “The organizer” “The fixer”
Whereas cancer has the potential of changing perspectives, it does not have the ability to change a person. So with that, find comfort in that most family members will act and respond just as many would expect. In the same token, if a marriage, a sibling dynamic, a parent/child relationship was strained before cancer, this situation will FYI: definitely test it and continue to be more Let your loved one challenging. still help and do things for you. A lot of their With everyone handling the process differently, tempers can flare identity feels like it and divisions can occur. Navigate through those divisions first, so has changed– still still that the tenstions can be minimized and the supportive energy for depending on them, in your loved one can be maximized. moderation, is important. C.A.R.E. – 97
Communication Styles
Patient People Pleasing
However people best expressed themselves and communicated in the past will most likely be how they choose to communicate in this situation. If one can recognize and identify exactly how they deal with crisis in their lives, their reactions to the diagnosis might make more sense, bring perspective, and allow them to deal cope healthily.
Clashing Caregivers This often happens in families where there have been sibling rivalry or control issues. Building a team is an important element so that one person does not bear all the work, however, there needs to be a “quarterback” both for medical and all other caregiving issues. To avoid “clashing caregivers” in a family, each must recognize they are on the “same team” & the importance of working together. Divide and conquer the responsibilities.
Some members of the family feel more pressure than others to “hold everything together.” When that person with cancer is the one that typically carries the largest responsibility in the family, it is very common for a pressure to remain to stay strong for everyone else to exist. Make a valiant effort to not spend your time worrying about your family worrying about you. You need all of your energy to give to yourself and to manage your health. “No matter how horrible I was feeling. I had to be the strong one. Because when I was down – everyone was down.”
The one with cancer FYI: oftentimes spends a lot of time putting Make it a priority energy into making sure to do memorable everyone around them things as a family and is taken care of, and still individually with your want to be helpful. loved one.
Handling the Holidays These days just might not feel quite the same. Either roles in your family have been adjusted so much that it feels unnatural or uncomfortable, or there are emotions and fear around what that holiday of that year may mean. This may put pressure on the whole day and tension in the household. Continue your ritual celebrations of birthdays and maintain the traditions that you can around the holidays. Be flexible with your plans. Overall, be open to re-defining that day with new traditions and ALWAYS be sure to cherish what it brings.
From Those Who Know! You do NOT have to be superwoman or superman. When you are down, you are down. Looking up information, doing my homework so to speak, allowed me to feel like a had a purpose, that my mom’s fight was all of our fight, and that together we are all vital to her treatment. It also allowed me to think of practical immediate things, and took my mind off the worst case scenario, wallowing in sadness aspect. It helped me become a go-getter, more optimistic. Be there for your parents...whatever that may mean- the best of your ability. Be there for your OTHER parent- the strain and stress can also impact them.
As a family you must stay strong. It is hard to see someone you love weak and sick. They are fighting, but will gain strength from your strength. It’s okay to cry...it’s okay to break down...it’s okay to do it together. Remember that it’s not about you– it’s about them– their needs are paramount and need to be priority to all Be careful about pushing family into attending or coping in a way that they don’t want to. Not everyone feels comfortable attending support groups or cancer-related events. Respect their boundaries. Asking for help and saying ‘no’ is not a sign of weakness- it will help make you [your family] stronger.
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Your Extended Family In addition to family and friends, the people that those with cancer interact with most are their doctors and nurses. These medical professionals often become your friends, mentors, and are regularly viewed as “family” by those affected by cancer. Sometimes the oncology nurses might even get to know you better than anyone else at this stage of your life. They do more than recalculate medication, triple-check your bloodwork, and give you your treatments. They listen to your emotional problems, hear how you feel, and above all else, they are on this cancer rollercoaster with you. These people aren’t just their loved one’s medical team – but they, too, mean a lot to caregivers.
SPOTLIGHT IELEEN GARCIA CHRISTUS ST.VINCENT REGIONAL CANCER CENTER
New patients that come in will now have a new set of caring friends. Everyone asks how I remember everyone’s name. That’s EASY. I always remember my friends. I have been here for 15 years and the best part of my job is how I’ve met some of the most wonderful people. We have our ‘WORK FAMILY’ that we laugh, care, cry and love each other.
Christopher Flores and Sabrina Romero are two of the many smiling faces you encounter during your visits to the CHRISTUS St. Vincent Regional Cancer Center
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Veterinary Cancer Care & Integrative Veterinary Wellness Wellness • Prevention • Holistic • Nutrition
“There is no medicine like hope.”
Orison Swett Marden, doctor and author “We are continually inspired by the healing powers of our patients. Pets are fighters; they are not statistics. Our patients have shown us time and time again that in every situation, there is cause for hope.” “When a pet is diagnosed with cancer, the question we hear most often is, “Is there anything we can do?” We are always happy to say, “Yes.”” Jeannette M. Kelly, DVM • Diplomate, ACVIM (Oncology) C.A.R.E. – 100
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Board CertifiedVeterinary Oncologist Cancer & Care & Integrative Veterinary Wel Doctor of Integrative Medicine
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2001 Vivigen Way, Suite B, Santa Fe, NM 8 (505) 982-4492 Our priority is to provide compassionate, quality care |towww.vetcancercare.co our patients and
their families. We hold the greatest respect for the human-animal bond and will always honor the relationship with your devoted friend.
Contact us at (505) 982-4492 or (505) 467-8037 to discuss wellness and prevention. 2001 Vivigen Way, Suite B, Santa Fe, NM 87505 ivetwellness.com | vetcancercare.com C.A.R.E. – 101
How Do I Help? Supporting a friend or loved one ~ If you or a loved one is affected by cancer ~ THIS SECTION WAS MADE FOR YOU TO SHOW, TEAR OUT or COPY for your friends. You can also send this as a link:
careguidesupport.info
When trying to help someone with cancer or one closely affected by someone’s diagnosis
FYI:
As a friend of one with cancer/a caregiver, you aren’t expected to know what to say. But know that you are expected to make a strong attempt to be a support for that person.
When it comes to having a friend who is living with cancer/is a caregiver or is somehow directly affected by a diagnosis, the feeling of helplessness may be overwhelming, especially if you’ve never had experience with the disease. With so many emotions, moods and shifts in conditions happening for your friend, it may be difficult to know exactly how to help, as they may not be properly communicating their needs. Because each person living with cancer (and members of their family) is different, it is extremely important to be aware of how your words and actions are perceived. Remember that a cancer patient and those in their lives had relationships before cancer hit. Those relationships are extremely important to maintain. The responsibility of maintenance just might fall on you, as a friend, a little more now. WORST Things People Can Say Or Do
BEST Things People Can Say Or Do “What can I do to help?” Then make concrete plans on what you can do to help and DO IT. Let me know if you need anything” is often times vague. Ask specifically or give examples of what you will do and let them pick. If you’re lucky enough to get told what you can do, be sure to act on it/be there if they reach out. “I’m sorry I really don’t know what to say. I don’t know exactly what you are feeling or going through” –It’s okay to be that sincere – it will be refreshing to them. They know there isn’t much that can be said. Be truthful. They will appreciate how genuine you are.
C.A.R.E. – 102
Compare- “I know exactly how you feel” – even if you’ve known someone who has had cancer or you’ve experienced it yourself, EVERYONE’S feelings are different and no one can TRULY know what someone else is going through. There are times for you to bond over similarities, but don’t always make it about you and something you’ve experienced. Treat them differently- Don’t stop telling them things about your life or joking around with them. They need normalcy and the relationship that you two used to have. They’ve lost a lot in their lives; don’t have them lose the dynamics between the two wl of you as well.
no K
Say you love them –The situation brings a lot of insecurities to all involved. Tell them loving things and continue to encourage them through the situation.
Withdraw because you’re unsure of what to do or say. “Ghosting” a loved one during this time is not something that they will overcome easily. It may be harder to re-enter their lives at a later time. No matter how uncomfortable or guilty you may feel, their journey is much tougher — and they need you to be responsive.
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is Power
Four Best Responses to a Hurting Friend I. AFFIRM “Thank you for having the courage to share that with me.” Affirmation after vulnerability reminds the revealer that their honesty was heard and valued. II. ASK QUESTIONS ABOUT FEELINGS “What did you feel when you first found out?” “What are you most scared of?” “What do you feel is hardest for those around you to understand?” III. VALIDATE AND EMPATHIZE “Your feelings are totally valid. I’m so very sorry you’re going through this.”
FYI:
If you have experienced something similar yourself or with a loved one say, “For me this was the case.” They will acknowledge that you aren’t comparing two stories or minimizing theirs.
IV. ASK HOW YOU CAN HELP “What’s the best way I can support you right now?”
DO: From Those Who Know! –LISTEN! Truly hear what your friend is telling you. Undivided attention is a priceless gift. Let them tell you their concerns and fears without trying to FIX them. Just listen. – Give pulse checks. Stay connected and be consistent. Keep asking how things are going throughout the journey without prying. Set calendar alerts reminding you to check in with a quick “hello” or offer of help on a regular basis. Reach out on days that might be especially difiicult. –Be responsive. Reply to every call, email and text in a timely manner. –“You look good. How do you really feel?” It’s important to acknowledge that looks can be deceiving.
–Be clear when you offer to help, about what you can and will do; clean house, cook, such as bringing meals or gift cards or provide transportation to appointments. –Offer to babysit, pick up kids at school or host your friend’s children for overnight visits, if applicable. – Arrange and pay for a housekeeper to come in at convenient times. – Send a text/call the next time you’re at the pharmacy or grocery store to see if your friend needs any items. –Plan some fun activities out of the house and away from treatment. Make sure the times and places are convenient and be understanding if your friend has to cancel.
– Affirm what they mean to you. “How are you doing…I’m –Greeting cards, postcards and humorous emails and serious. I really want to know… because you are very texts are easy ways to express your love. important to me.” –Touch or hug your friend at every appropriate –Send random “thinking of you” notes and/or gestures, opportunity (if that was common in your dynamic) to such as cards. Any outreach can show your love. show them you care. –Keep your friendship a two-way street. Spend time –Tell them you love/care about them. Even if they don’t listening to your friend but also share updates on your have the energy to respond, your message means a lot. own life. Whatever you talked about before the cancer diagnosis will still be appropriate after. It helps with their –Schedule visits or times to hang out in advance – and with enough time for them to prep (mentally and sense of “normalcy.” physically) for the interaction. –Apologize if you haven’t been there for them. Don’t give excuses. Just acknowledge your absence in their time of –Laugh with them! Humor always brightens a day. need and show desire to remedy it. –Help your friend focus on good feelings and moments of happiness. –Do ask questions to show interest. – Be there months…years after the diagnosis. Your friend/ –Forgive them if they don’t ask about your life as much, are less responsive in touch with your needs. It’s not that loved one still needs you (probably even more as time goes on). they care any less about you; it is just that sometimes they can’t get their minds out of their own situation. – Attend (or start) a cancer-related event/walk in their honor. C.A.R.E. – 103
It Happens... Those with cancer and their loved ones frequently talk about unintentionally cruel, insensitive or seemingly harsh things that friends might say. Both the caregiver and the patient are fragile and vulnerable. Sometimes people think they are being supportive and encouraging when they are actually diminishing your experience. “You’ll get through this and it will all be over soon; just keep a positive attitude” is not always helpful. Allow people to have their own feelings and be willing to listen without trying to “fix” them. Each person needs to have their own experience and needs to feel affirmed in that experience, whatever it is.
FYI:
Many don’t want to “bring up the cancer” because they don’t want to “remind” their loved one of it. Know that it is already on their mind 24/7 and when you don’t ask. It sometimes gives the impression that you simply don’t care.
DON’T: From Those Who Know! old it against them if they are unresponsive to your H outreach or less than congenial at times. They are going through enough, so don’t blame them or criticize them for being reclusive.
–Make excuses- for why you haven’t been supportive. Feel free to explain factors, but always end with “but that’s no excuse, I shouldbe here for you throughout this, regardless”
S tare. They know they might look different. No need to bring more attention to it by how you look at them.
– Get offended if your friend declines an offer to hang out. Sometimes the energy just isn’t there.
S ay “At least…” or “look at bright side to start off a reaction to something they vented to you about.
–Offer “alternative” diagnosis or medical advice.
–Say “Yeah, I’m tired and busy too” if they vent to you. Tiptoe around the diagnosis. If they know you know about It’s a different type of fatigue and stress that they feel. the diagnosis, ask about it. Don’t ask passive aggressive One with cancer or their caregiver may feel like you are downplaying their feelings or their situation. questions. Focus on looks. Just because they may look good doesn’t – Wait for your friend to ask for help. Be proactive. mean they feel good or vice versa. –Be overbearing with too many questions if they are unresponsive. It will be evident if they don’t want to talk Question their faith or spirituality if they are having a about it. hard time. Just because they are struggling doesn’t mean they don’t still have a commitment and a healthy –Say “You’ll be fine,” or “everything happens for a conviction of their beliefs. reason.” Sometimes overly optimistic reactions give the impression that you don’t understand the pain or severity Stop sharing things about your life. of the situation. Play the compare game to someone else you know who has cancer. “Yea, I know exactly how you feel.” Eveyone’s –Talk about a friend/relative of yours that is sick/dying (unrelated to cancer). It comes off as very insensitive. situation is unique. ake their cancer/situation YOUR story. It’s not your place –Send “get well soon” messages. Cancer is a long M journey and it isn’t that easy to get well. to tell others about it. Always ask permission to share news with others, and let your loved one know when you –Tell them how to fight or treatment to undergo. have done so. –Don’t blame them for distance in relationship. Telling a Rely on Social Media for interaction. If you have time friend they need to take responsibilty for how they have to “like” things on Facebook, you have time to send a made YOU feel while they or a loved one is navigating thoughtful text message, email, or make a call. cancer is extremely selfish. They won’t forget you blaming them in quite possibly the hardest time in their Only discuss their illness. life and will feel extremly hurt you approached their/their Take more than 24 hours to reply to any outreach. They loved one’s illness like that. need to feel that you are responsive and available, otherwise they definitely will not lean on your when they –Freeze or Divert conversations- if someone wants to speak about how hurt they are or what comes next after need you. life. No matter how uncomfortable you may feel, they Say “everything happens for a reason.” need you to be responsive and present in this dialogue.
C.A.R.E. – 104
Talking to your friend may have awkward silences or times where you are unsure of what to say. Always respond to them based on what they tell you. Use this flow chart for an idea of how to direct the conversation based on what you are hearing/inferring from your friend. Your intent might be good, but you can always improve and practice your approach on how you say things.
“How Are You?” Doesn’t want to talk: Fine. How are you (your loved one) feeling? Fine. Do you need anything? What can I help with? Nothing.
How about I (then give an idea, or) Well I’m here and if you want to talk or, ANYTHING comes up please let me know. (See how they respond then follow their lead.)
Feeling vulnerable:
Feeling overwhelmed:
Oh, I’ve/they’ve been better.
Things have been super busy.
What’s been going on?
In terms of work, your family, your health, personally or what?
I/they just don’t feel good and we had a rough appointment this week. What happened? What will make you feel better? (They tell you. Continue to ask questions so long as they seem engaged/ want to talk about it.)
Do you need anything? What can I help with? When is the next appointment? (they tell you) Act on what they said they needed help with and follow up with them after that next appointment.
SUPPORTING FROM AFAR
Being away from a loved one or dear friend that is hurting is tough. Sometimes saying something like, “I wish I was there so I could give you a big hug or so we could …[insert a special/ funny/great memory here] together, is helpful and genuine to hear. Reach out and be responsive when they reach out to you. Ultimately, from afar, your job is more difficult–but that’s not an excuse to not “be there” for someone you care about. Be persistent and don’t get offended if they don’t reciprocate. Your goal is to make up for the miles in between you two. C.A.R.E. – 105
Just everything... Okay,let’s take it one thing at a time. What is busy for you in terms of…(hit topics one by one - they tell you.)
Wow-I wish I could just fix this for you. Would this help? (then offer an idea to make them feel better. See how they respond, then deliver on a gesture.)
What do you have coming up? Any appointments that are particularly important to you or things you have coming up in your life? (Focus on that for a bit and mentally note what they tell you, so you can follow up with them.)
If talking to your friend is unnatural to you, write a card or a letter to help explain your intentions and your commitment to being there for them during this tough time.
Sample Letter to a Hurting Friend Dear {Huting Friend} I am writing to you because I know you’re hurting, and you know that I know you’re hurting, but every time I see you or talk to you I feel like all I do is add awkwardness to the pain by saying nothing or mumbling one of those despised cliches. I’m so sorry. I so very much want to be a good friend to you through this, but I feel clumsy and clueless.
FYI:
Truly being there for someone you care about is often a trialand-error process. Keep working at it. They need you, now and in the future, more than ever. If you care about someone, do not give up on them –no matter how hard it gets for you or how underappreciated you may feel. True friendship is about trial and error and not retreating when things get difficult.
I have never been through what you’re going through, but even if I had I would not know exactly how you’re feeling. I want to honor your privacy, but at the same time I know that pain can be really lonely and so I want to be your friend through this… I just don’t know how.
Please teach me to be your friend through this. I don’t want to talk about the past if it reminds you of happier times and intensifies this present sadness. I don’t want to talk about the future if it makes you feel anxious. I don’t want to talk about me – I feel guilty sometimes for having it so easy while you are in the midst of the furnace. And of course, I don’t want to make you talk about you – this is consuming enough for you already. And yet we’ve always been able to talk. So educate me. Let me know if it’s a talking day or an eating-cherries-silently-day. Let me know how I can pray for you, if I forget to ask. Let me know if I can mail something, pick you up something from the store, bring you a latte, if I forget to ask. Because I love you and I’m so sorry you’re going through this. Whack me on the head if I turn into that awkward cliche-drooling friend again. I want to do better than I feel like I’ve been. I’m with you and here for you, ~Sincerely, Me “Letter to a Hurting Friend” courtesy of bronlea.com
C.A.R.E. – 106
Focus on Friendships Having cancer or having a loved one with cancer, obvously, affects your body. Your mind, spirit, and lifestyle may also be impacted. Spouses, children and families feel the waves of the diagnosis. Your relationships with your friends and or co-workers can also be impacted. For some, cancer has and will only amplify the bonds and appreciation for those in your life! Your friends and those around you might have been overwhelming in their support. This is definitely one of those positive takeaways (see pgs 50-51) that some are able to chalk up to the diagnosis.
FYI:
You are not expected to “coach” those close to you, on how to be supportive. They might, however, make small efforts or gestures to help ensure you get assistance and feel the love from them during this difficult time.
This section, however, is for those who might have concerns about certain friendships or have felt underwhelmed by the level of support they’ve received. There is no way to ensure that you won’t be disappointed in or hurt by a friendship or dynamic. There are simply ways to help with efficacy and perspectives to not feel “kicked” while you are already down. Know that you are not responsible for whether or not your friendships last through this time in your life. Let’s say that again... YOU are not responsible for whether or not your friendships last through this time in your life. Tips or advice tgiven here are all simply in the effort to “help you help others” be there for you. Ultimately, the “Let me “Know know if goal of the journey through your or a loved one’s cancer is to amplify that I’m you need support and positive interactions, while diminishing any further hurt here for anything!” or feelings that exhaust you more in your current situation. you!” These are some things people may say to you. It is common to simply smile, say “Thank you, I appreciate it,” and move on. Take the opportunity when you can (even if you aren’t asked) to express how you can be supported. Simply say, “Actually – you could help me with something...” Then proceed to give them a task. Here are some examples of what others can help you do:
Locally:
From a Distance:
LOCALLY: r Pick an item up from the store. r Drop off/pick up a prescription. r Get my mail. r Take something to the post office. r Take my child(ren) to school/practice. r Pick my child(ren) up from school/practice. r Help cook/pick up a meal. r Call a friend or relative for me. rR eturn text messages to people on my phone – I’ll tell you what to say. r Walk the dog – care for my pet. r Give me my space for a couple weeks. r Take trash out weekly. r Do laundry, dishes or any other house work. r Do yard work or manual labor. r Don’t depend on me for a while. C.A.R.E. – 107
FROM A DISTANCE: r Stay on pulse and reach out to me more. r Tell me about your life and ask my advice. r Respond/answer my outreaches in a timely manner. r Give me some space and be patient for a while as I figure things out. r Set up a time to have a quality phone conversation or video call or come visit. r Reach out to me on days that you sense might be tough (certain appointments, holidays, anniversaries, etc.) r Send cards periodically. r Text me jokes, mindless funny photos, etc r Start a GoFundMe/mealtrain/PayPal page to help with finances or food. r Keep other friends updated R for me.
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“Miss Understanding hasn’t really been there for me through this.”
Meet “Miss Understanding”!
“I totally am trying to be there and have been a support for Miss Understanding.”
“Miss Understanding” might already be in, or might enter, your friendships. Sometimes the recipient feels YOU: neglected, whereas the friend feels completely satisfied with their efforts, and oblivous to how their actions (or lack there of ) are affecting the other person. The discrepancy YOUR FRIEND: isn’t necesarily anyone’s fault. Oftentimes people offer and provide support in the form in which they would prefer to receive it–which isn’t always universal. If you don’t feel supported by someone, and it is hurting you, there are two options: 1) Tell them you need them to be there for you more these days and explain how they can make such an effort. 2) Let it go. Ultimately, what it comes down to is how much energy you want to put into that friendship. You must do whatever you have to in order to not let the situation weigh you down. If you tell someone that they’ve hurt you, be prepared for a response that might dissapoint you. Let how they react to your concerns guide the decisions you make about that friendship in the future.
REASONS FOR THE “DISAPPEARANCE”: A friend may not be as engaged as you thought they would or as they used to be due to a variety of factors, including:
✔ They simply don’t know what to say or do. ✔ They feel they have already done or said something wrong. ✔ They feel their level of engagement is sufficient. ✔ They feel their efforts aren’t appreciated or haven’t been acknowledged enough. ✔ They are stressed in their own personal life.
Your situation ✔ reminds them of a personal one they have had, and it’s too hard. They are ✔ preoccupied (work, marriage, children, grandchildren, own responsibilities) in their own life. They assume ✔ you have enough support/what you need from others.
✔ They aren’t good with sickness, serious or mortality issues. C.A.R.E. – 108
FYI:
Let your friends know at any given time if you prefer text messages, emails, social media or phone calls. Then, if you can, offer a basic overview of days, times and dates that are best or not ideal for communication.
From Those Who Know! –All my well-meaning and loving girlfriends often said things that I felt bordered on inappropriateness. Perhaps it was the fragility of my mental state, my overall crankiness...I found myself not wishing to discuss my situation with anyone I felt I perpetuated or invited negative energy, and that only a few people could still see ‘me’ in spite of the disease.
–Just because you or a loved one has cancer doesn’t mean you are a saint. So you can’t necessarily get away with being relentlessly rude or mean. You do merit a deeper empathy, compassion, patience and understanding from those who care about you, though.
–Some people don’t find it helpful to talk to people because they often don’t seem like they want to talk about it, or divert conversation and that makes things worse.
FYI:
Regardless of why someone might “be there” for you or not if you feel hurt by their absence, do your best to refocus your energy on those who bring you solace and comfort. Some people just might not be compatible during certain stages of life. Now this may change in the future – but for now, invest in those who make you feel best.
–I learned how mutual sharing sharing of my feelings actually helped the both of us. –It’s time to become HUMBLE and tlet others help you. You won’t have the strength every day to handle things and aren’t expected to. –When I was first diagnosed a fellow cancer survivor told me, “call me when your friends get weird and desert you.” At first I didn’t understand – now I do. –It’s not your responsibility to protect others from your illness, discomfort, or awkwardness they may feel. It’s up to them to remedy that and make better efforts to be there for you.
Try to:
Try Not To:
hank those who are there for you during T this tough time. Letting them know the appreciation you have for them is a great and easy way to affirm their efforts and to keep a strong bond. arefully assess who lifts you up and C provides a positive relationship in your life right now. e honest with those close to you that, at B this time, you want to maintain a strong relationship with.
et yourself get consumed by one person L or situation. You need all of the energy you have. Blame yourself if a friend distances themselves. They simply don’t understand. Take an experience of with one individual out on another. Hold onto resentment – it is distracting and toxic. You, once again, will land out hurting.
e “relatively” responsive through an B acknowledgement of a text, email, call; it can be as simple as “Hey, thank you for the outreach.”
C.A.R.E. – 109
FYI:
Forgiveness can be a beautiful thing. It is something that is always conducive to a friendship. It’s good for them AND you to have that peace – even if the friendship has now forever changed for you.
From Those Who Know! Let others help you. No matter your position or theirs – if they are willing, and you have a need, let them. If you tell someone you haven’t felt their support, and they genuinely apologize, accept it! If a friend is overwhelming you and intruding on your space, time or privacy, ask a loved one to help serve as a “buffer” or intervene. But keep in mind, at least they are making an effort. Put difficult friends/issues “on a shelf” until you are able to tackle it. Say, “I don’t find this conversation supportive right now” if you engage in a toxic dialogue. Attempt to manage your expectations so as not to be disappointed. Don’t turn away offers! If someone asks to help, give them a task that best suits them. It’s time to become humble and let those that offer help you. Show grace for people that don’t understand what you’re going through and don’t know how to act. Treat them the way you would hope to be treated in a circumstance that you can’t relate to. Focus on those in your life who have been a blessing! They deserve your energy.
C.A.R.E. – 110
FRIENDSHIP FROM THE FIGHT: Many with cancer (or mutal caregivers) have found– find that their bond grows with others who have had or are experiencing cancer in a some way (as a patient or caregiver) Comfort is found in support groups, nonprofit events and programs where there is interaction within the cancer community. Oftentimes deep friendships are born due to the fact that, although every case differs, the other has a greater understanding as to how the other one feels.
Navigating Grief Whether it be a shattered friendship, one’s job, a divorce, or a death of a loved one, many will experience a “loss” in their lifetime. Grief can even start upon someone’s diagnosis – for them or someone that cares for them. It doesn’t necessarily coincide with a death, but it can be a change or loss of life as you knew it to be. Any loss creates a void. Grief is a word that embraces the various feelings and thoughts you might have about the loss you are dealing with. Grief can include pain, overwhelming sadness, despair, anger, relief, shame, guilt, joy, and fearfilled questions of how you will live now.
FYI:
Celebrate the little victories. Say “I didn’t have a complete breakdown today” or “I slept last night.” Be proud of those mini milestones.
There may be large heartbreak if you lose someone close to you, especially if cancer was involved and you were on that journey with them. Be honest about how their death affects you. Recognize that some extra support from friends, family and professionals may be even more appropriate and needed at this time. First, we can drop the assumption that grief is a bad thing. It certainly feels painful and awful and damaging, but grief is a necessary part of the healing process, a new stage of consciousness from which we can deepen our understanding of ourselves and our world. It’s only when grief is denied, placed under a Band Aid of good intentions and decorous codependence, and left to fester in shadow, that it can do us any real harm.The hardest part about losing someone is the fact that this isn’t just a chapter of your life, and they will walk in that door again. They won’t... and that’s one of the most difficult realities for grievers to face.
Re C.A.R.E. – 111
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Resources... AMBERCARE | *Call 505-982-4098 *Ask for the bereavement counselor GENTIVA HOSPICE | 505-988-5331 | Regina.Sanchez@gentiva.com PMS HOSPICE | Owen Kunkle, 505-988-2211, owen_kunkle@pmsnet.org DEL CORAZON HOSPICE | 505-988-2049
The
EILEEN JOYCE
A CLOSER LOOK AT GRIEF RECOVERY How does grieving and cancer go hand-in-hand? Loss of health is one of the major losses that often causes a person to grieve. With any serious illness the challenges can be overwhelming. In addition to the time, money, and energy expended, there’s the discomfort and pain involved in doctor’s appointments and treatments. What are the right vs wrong ways to grieve? There is no right or wrong way to grieve. Grief is the emotional response to loss of any kind. Each person has their own relationship to the loss, and therefore each person grieves in their own way. When should you talk to a professional about your grief? Devastating losses are depressing, and it’s helpful for anyone experiencing such a loss to get professional help. Expressing your depressing thoughts and feelings to someone who understands grief is a major step on the journey of healing. Do the “stages of grief” exist and how can they be managed? There are no stages of grief. Grief comes like an uncontrollable wave, sometimes totally engulfing one, other times just a ripple—and everything in between. The stages
Expert is
IN
people talk about are based on Elisabeth KublerRoss’s book on death and dying, but she explained later in her life that everyone experiences grief in their unique way and that the “stages” were misinterpreted. What is a common misconception of grief? “Time heals all wounds” is one of the myths relating to loss. It is just not true. We all know someone whose loved one died years, sometimes decades ago, grieving as though it were yesterday. Time changes how we deal with a devastating loss; it is not what heals our broken heart. What can come from talking with others about grief (i.e. grief support group)? Talking about grieving and losses is a healing step when it is in a safe environment. Hearing other people’s stories is sometimes helpful. Having actions that help you process the loss and get to a sense of peace is critical to being able to enjoy life again. To view the full Q & A with Eileen Joyce online: visit careguide.info Eileen Joyce, professional coach/ grief recovery specialist 505.428.0670 eileenjoyce@comfortkeepers.com.
SPOTLIGHT
I C.A.R.E. – 112
BEING THERE THROUGH SOMEONE’S GRIEF
Resources... There is no start date and end date to grief. Give yourself time to heal and be patient with that process. There are people who struggle with similar situations and resources in place to help bring comfort. FOR EVERYONE: A year of daily grief support To receive a grief support message each day for a year and other digital resources courtesy of Berardinnelli Family Funeral Home visit careguidegrieving.info ONLINE COMMUNITY SUPPORT: Refugeingrief.com Griefshare.org See listings of Grief Share support groups available in Los Alamos, Rio Rancho, Albuquerque and Belen FOR WIDOWS/WIDOWERS: widowedvillage.org/
We aren’t taught how to deal with someone who’s grieving. Because we don’t know what to say, our typical response is to give advice, which is a mental response to an emotional issue. It doesn’t help the grieving person. Realize that there is nothing that can be said to heal someone’s grief. Nothing. Grief belongs to the one who is in it. What people ultimately need are people who are willing to listen and accept what they are saying without correcting or perceived judgement. Of course, people should say SOMETHING. Regardless of how uncomfortable it is for them. Acknowledge their loss and express your sympathy. Being fully present to their pain is important. Try to: Attend their loved one’s services, if professionally, geographically and financially you can make it work. Or at least make a hard, concerted effort to. Keep reaching out after a month...two months...etc Your loved one or friend definitely is not “okay” or “over it” within at least that first year (if ever). Forgive your friend for not being as responsive or congenial as maybe they once were– their pain is unimaginiable right now. Lastly, be proactive and consistent with your efforts. *See pg 102-106 for more recommendations and sentiments on how to support someone who is grieving*
The journey between you and your loved one doesn’t end when your companions transition out of your life. After all, you carry their memory, their love, with you as you walk this path of life. Wherever it leads, they will be there with you. Everyone you’ve ever loved will travel with you. They will reside in the home of your hearts, and continue to enrich your experiences for future days.
FOR CHILDREN: www.childrensgrief.org 505-323-0478 www.hellogrief.org/ For children, teens, parents and mentors. Associated with Comfort Zone Camp, a FREE grief camp for children ages 7 to 17 C.A.R.E. – 113
From Those Who Know! ON THE LOSS OF A LOVED ONE:
– Turning my sadness into action in some way
– Support from my family and friends have really helped me get through this
– Finding people I didn’t have to be stoic or strong in front of.
– Those that let me talk about my loved one, without diverting conversation or getting awkward is refreshing
– I listened to his jazz CD’s/ favorite songs – I went to Grief Share
–M edical care for anxiety, depression and panic – Grief lingers when we don’t express the incomplete attacks emotional conversations that go on in our head – Therapy helped me emotionally and mentally and about the person or relationship we lost. kickboxing for physically – Life doesn’t seem real and I feel so misunderstood by – I became an oncology nurse everyone around me – This can be a devastating loss in addition to dealing – I got a tattoo that reminded me of them with the death. When grief becomes complicated – Going to a grief camp for children by one loss after another, it can leave you depleted, – Remembering that I told my mother I loved her depressed, and passionless. Healing your broken every single day and I do not regret anything heart must come before you can truly recover your energy and desire to find renewed purpose in living. – Organize or participate in an event in their honor – After I lost my dad life has been different, sad, and – I became involved in the Pancreatic Cancer Action weird – there aren’t better words to describe the Network after the loss of my brother. dream that I feel I’ve been in. – I keep their items, clothes, belongings close to me – I’m unsure if the reality that they are truly gone will actually ever hit me. Doing things for and about them – I go running, and feel his presence – running was my father’s and my thing are the only things that help right now. – I visit my husband’s grave site almost every day – I thought caregiving and watching my loved one deteriorate was hard. That was nothing in comparison – I ’m opening my own Barre Code studio – that’s where to the pain I now feel not having them here in my life. I feel the most connected to my mom “WHAT HELPED/IS HELPING ME GRIEVE” – I took my dad’s bucket list and am working alone to accomplish them for him. I figure, since he’s always – Talking with others about them “with” me, if I’m there, he’s “there” and thus doing – Talking to my loved one still – out loud even. the things he wanted to do. – Listening to their voicemails, reading their sent text – I wrote a magazine about cancer trying to help those messages and handwritten letters diagnosed and their loved ones – Reminiscing on our times together – I look at the reminders of her in my home i.e. her paintings and gifts – Crying/Not crying – Reading books about losing someone/the afterlife
– Make traditions in doing what they enjoyed
– Praying/meditating/going to mass/church
– Do things to channel them or make them proud
– Going to grief counseling/therapy/support groups/ Grief Share
– It helps me to remember how I was able to get there in time, kiss my dad and tell him I love him.
– Volunteering for something cancer-related in their honor
– Knowing that they are always with me... brings me comfort
– Just hugging someone, not saying anything
– I stay busy – work helped.
– Getting over the anger I had because she didn’t take proper steps to prevent this
– I took some time off of work.
– Looking at pictures of them
Share your personal coping mechanisms:
– Not looking at pictures of them
visit careguide.info C.A.R.E. – 114
Cancer Costs A cancer diagnosis brings about more appointments and more medicine, and therefore more cost. The financial implications of cancer are something you should address up-front. Learn as much as you can about cancer, your treatment and its costs before starting treatment. Don’t wait until you have financial problems to discuss costs with your healthcare team. Even though you may have managed your finances without help before, you may not have the energy to deal with new money issues now. It’s wise to ask a friend or family member to keep track of costs, go with you to doctor visits and help with these discussions. Sharing this information is a sign of strength and can go a long way to easing the stress of a cancer diagnosis. Once you have a general picture of what your treatments will cost, you can ask these important questions:
What public resources can I pursue? If you are not employed, contact the Social Security Administration 800-772-1213, SSA.gov Centers for Medicare and Medicaid Services provide information about patient rights, prescription drugs and health insurance. Contact 800-MEDICARE www.medicare.gov
Where can I cut back expenses, and what other changes can I make so my money lasts through my treatment?
What private resources can I apply for? See pgs 62-63 for financial assistance for New Mexicans with cancer.
Take the time now to set up a realistic monthly budget, looking at all your fixed costs such as housing and car payments, as well as your income and personal expenses. This will give you a good starting point to see the big financial picture.
FYI:
Sometimes when there are financial struggles during a diagnosis or treatment, family or friends solicit assistance from those they know via networks like GoFundMe.com, Pay Pal, or through email/Faebook groups. Speak with your loved ones if this is an option you’d like to explore.
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Staying on Track Setting aside a few hours a week to review your bills and financial status will give you a realistic picture of your situation and help keep stress at bay. If you can do this with the help of a trusted family member, friend or counselor, it will be a much easier process.
STATEMENTS vs. BILLS
Statements and bills are TWO DIFFERENT THINGS – but remember that statements eventually turn into bills. Put all financial information in one folder. Get organized and review both with a caregiver, friend, loved one or support such as a social work, patient navigator or counselor.
Your Body and Your Bank Your health situation on top of financial woes can be a lot to handle. To reduce your stress have someone help you accomplish these productive tasks:
R Add up monthly payments to hospitals, clinics, doctors, radiologists and others involved in your treatment.
R Note how each of these bills is paid — online or by mail — and when the bills are due. R List the contact information for the billing person or department for each of these bills. R Write down the last four digits of your Social Security number and your birthdate, as these are often required when you contact billing departments.
R Write down the debit or credit card number used for payment, as well as the PIN number that goes along with it. Make sure that a family member or trusted friend knows where the debit/ credit cards are kept in case they need to access them when you cannot do so.
R List any public or private financial help you are getting, along with contact names and phone numbers.
R Finally, review your monthly budget to see where you are on track and where you need to make adjustments.
C.A.R.E. – 116
The
KIMBERLY NOVA WILL SALES AND SERVICE REPRESENTATIVE II
If you have recently been diagnosed with cancer and you are concerned about money know that you have resources. Use your energy to talk to those around you (doctors, nurses, friends, family members) about resources in Santa Fe. Medical staff may have phone numbers to drug companies that can help with the cost of some drugs if you can’t pay for them all yourself. Go to your bank and talk about options like a Line of Credit – that is a sort of safety net if you need it. Or, if you aren’t up to doing the research reach out to someone around you. I promise that people will want to help, we just need to know how. Here are a few basic budgeting tips to help you start to address your financial concerns: 1. Call around and see if any financial advisors in your area do free consultations. Before you get there focus on one or two main areas that you’d like to focus on. Retirement? Investing? Budgeting? Making sure your family will be taken care of when you’re no longer here? A financial advisor can help you make a plan where they are very involved or not so involved but can help you meet your goals in a carefully thought out plan.
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2. Make savings automated, if you can. We always have the best intentions when it comes to saving money but the follow through can be difficult. Look at your income and finances and see what you can set aside to put in a savings account. Even if it’s 5 dollars per paycheck that will end up adding up in the end. Once you’ve come up with a number you are comfortable with set up an automatic transfer from your checking account to a savings so it happens without you thinking about it. 3. Save all your change and small bills and put them in a container that is somewhere where you’ll remember to empty your pockets/ purse regularly. This sounds like a silly tip but often times we don’t realize how much every cent adds up. At the end of every year you’ll be surprised at how much you’ve saved throughout the year just by saving your change. Kimberly Nova Will Sales and Service Representative II First Citizens Bank 700 Paseo De Peralta Santa Fe NM 87501
How to Pay By Mail
Online Cash
Bills can be paid in different ways. So when you are reviewing your finances with your loved ones, be sure and specify how exactly your expenses are taken care of. Money management can be stressful all in itself. Adding cancer to the situation understandably might be overwhelming. Be patient with yourself and USE THOSE around ou to work it out with you.
C.A.R.E. – 117
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C.A.R.E. – 118
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LOCAL CONFIDE NCE C.A.R.E. – 119
Cancer + Career
Managing a serious illness, such as cancer, can feel like a full-time “job” all in itself. Add an actual job and career into the mix and there may be some increased challenges to navigate through. It is Catch-22 in that one knows they should be focusing on their health, but they can’t pay for their healthcare unless they work, which sometimes makes them feel worse, so they need more health remedies – sometimes it may feel like a vicious cycle.
From Those Who Know! WHY I WORKED DURING MY CANCER: • My health insurance comes with the job. • I need income to financially support myself/ my family. • I really enjoy my job. • I get a sense of fulfillment and normalcy in working. • My job helps me feel purposeful and like I’m making a difference. • People depend on me at work. • Working helps me to stay busy and active.
Items to Keep at Work... A notebook to jot your impressions, notes, questions for the doctor, etc. Digital recorder or tape recorder
Reflection on the Role of Work Try to process the presence of your job in your life and determine your needs when it comes to treatment and your career: I. T ell your doctor exactly what your job is and any unique circumstances you’ll be coping with.
FYI: You may find duties you used to tackle easily take more effort and energy nowadays. Be patient with yourself. You are doing the best you can. Take it one hour at a time.
II. Let your doctor know that it’s important to you to make decisions that are good for your health and your job whenever possible.
III. Ask for general ideas of how your diagnosis, medication or treatment could affect your job. IV. S ee if you can be flexible with the time you take your medications in order to minimize any side effects at work. – i.e., oral chemotherapy and other options that might be less disruptive to your work schedule.
Post-It notes or flags to highlight important pages in documents Pens, pencils and highlighters to help remember important items
FYI:
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Everybody’s job situation is different. The best way to know your options and benefits are to discuss them with your HR department and/ or supervisor, if you feel comfortable with that.
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Cancer is a very individual disease and can be handled however you want. Co-workers only need to know what you want them to. Just because you work with them doesn’t mean you owe them any personal information.
“No” Everyone has limits and it is important to take the time to figure out what yours are and what triggers them, especially while juggling work, cancer treatment and recovery. In personal lives, it may be easy to tell someone that space is needed or you prefer to be left alone. However, work culture often makes that hard to do, making it critical to find productive ways to communicate your limits. Learning to set these boundaries on the job might enable you to decline certain types of requests, such as staying late for nonessential FYI: tasks or being given new projects to complete. Determine what projects you can make portable– Although it can be difficult to say no, figuring out how to do that and work on in waiting can help you become a better employee; you won’t be overburdened rooms of appointments with extra work and you won’t feel trapped by every task you receive. or at chemotherapy If you are working through cancer, you need to clearly ask for what sessions – and take a few you need from your employer and co-workers, and remember that days off if you ever need your top “job” is your own well-being. The key to setting effective to regain your strength. boundaries in the workplace is crafting language that feels natural and communicates the “no” message in a way that is still professional and team oriented:
SPOTLIGHT
“I appreciate that you thought of me for this project but I’m a bit swamped this week and am concerned about my ability to get this back to you in a timely manner.” “Thank you for offering me these additional shifts. Unfortunately, I’m short on time at the moment as I’ve got some family obligations to attend to. But I’d love to talk about this possibly again in a few months, once the situation at home has settled down.”
VALERIE PICKETT Pickett Law Firm, LLC Las Cruces, NM ON WORK: During treatment the
“brain fog” was real for me and I often made mistakes that I felt were embarrassing. I often couldn’t find the words I was looking for or simply couldn’t remember things people had Valerie Pickett told me. I could deal with the fact I had physical limitations because of the treatment, but the mental limitations were hard for me to accept, even if they were temporary. Every day it has gotten better.
TO HER SPOUSE: My husband has been with me
through every step and I didn’t try to hide anything. He continues to remind me that the physical changes are temporary.
FYI: If you neelp applying for Social Security Disability, use NM’s LIPA program – see pg 124
TO OTHERS: Give yourself a break! I was harder on myself than my co-workers ever were. I learned that my mind and my body needed rest and I had to be selfish, even when I felt I needed to be working. I worked some from home but needed the personal connections and support from my coworkers. Cancer is a marathon, not a sprint – and maybe those who get cancer are the ones who can handle it. To read more online about Valerie’s story, Visit careguide.info C.A.R.E. – 121
Dress for the Occasion To decrease the time and energy you spend on your clothes, create a work uniform. Find a basic “look” that suits your needs both professionally and physically. You have enough to deal with; your wardrobe is not something that you need to stress about. FYI: Opting into disability plans usually can only happen during health insurance Open Enrollment Periods (dates dependent on place of employment).
Making Work...WORK If you plan to continue working while undergoing treatment, you can make the process easier for yourself – as well as for your employer and co-workers.
MAP OUT YOUR WORK WEEK Keep careful notes about the way you feel throughout each day and week to reveal important patterns FYI: about the effects of your treatments and Using PTO (vacation/ medications. If your hours are flexible, leave/sick days)during work during as many of your peak-performance hours as possible. A absences are the FML You can also schedule important meetings and presentations for the way to get paid, only mornings or afternoons when you know you’re likely to feel your best. job is secured the but If you are strategic then you just might minimize chances of a health/ for both the law r unde work conflict. Tell your boss.“I may need a limited/flexible schedule,” er or their canc with one Then give the amount of information you feel comfortable with. caregiver. FIND OPTIMAL TIMES FOR TREATMENTS Reviewing your todo list and obligations can help you determine whether it makes sense to schedule doctor appointments before work, during your lunch hour or at the end of the day. If you feel exhausted three or four hours after treatments, for example, schedule 2 p.m. appointments, so you’ll be off work when that fatigue hits. Or if your body needs a few days to recover from treatment, try to schedule sessions for Friday afternoons.
A Helpful Checklist... Use the following checklist to either find out on your own, or discuss with your HR Department (if trusted.) • Have I been paying into any disability plans (short term/long term) • Have I been paying into social security disability? • What is the percentage of my disability plans (if applicable) • How much vacation/personal days/sick days do I have • Is it possible to work remotely? • What are the part-time vs fulltime options? • Does the company have a PTO pool where vaction and sick hours are able to get donated from coworkers?
THE LAWS:
FAMILY AND MEDICAL LEAVE ACT (FMLA) Depending on the location, FMLA may protect your job and benefits for unpaid absences up to 12 weeks (and it doesn’t have to be used all in a row). • Complete paperwork from your company’s HR department to become eligible. • If FMLA has been exhausted, look into long-term disability coverage. Your employer SHOULD have knowledge on this act. If in acutality they aren’t that helpful,–know that you should take matters into your own hands and work with a social worker yourself. AMERICANS WITH DISABILITIES ACT (ADA) In most cases, companies that have 15-plus employees are required to make reasonable accommodations to help you do your work by allowing time off for appointments or allowing flexibility with your schedule. IT IS ILLEGAL FOR COMPANIES TO TERMINATE AN EMPLOYEE FOR HAVING AN ILLNESS AS LONG AS THEY ARE STILL ABLE TO DO THEIR JOB. If you feel an injustice in the workplace has occurred, file a complaint with the Equal Employment Opportunity Commission (EEOC). C.A.R.E. – 122
Winning in the Workplace • Communicate regularly with supervisors and co-workers to let them know how you intend to stay on top of your work responsibilities. • Initiate regular meetings with supervisors – and colleagues, if appropriate – to review expectations and productivity. • Inform supervisors and co-workers if there’s any change in your condition or treatment that will affect your performance. If you need to take time off, stay in touch with one or two people by phone or e-mail to keep your lines of communication open during your absence.
FYI: It is rare to feel comfortable and confident in the logistics, details, and information regarding employment and cancer. Know that you are NOT alone in any frustrations or confusing feelings you may have trying to sort everything out.
• Deflect unwanted conversations if someone asks, “How are you feeling?” or, “You’re back!” by saying, “It feels good to be here” [then ask/bring up something work-related, to get the attention back to something professional]. • If you need help, ask. It doesn’t convey weakness. It shows that you’re invested in ensuring the best outcome for any given project. FYI: For more support in identifying what triggers your limits, consider talking to a social worker or palliative care specialtist who can help you craft personalized language to communicate your needs at work.
When Career and Cancer Collide Friends and family members might have their opinion as to whether someone should or shouldn’t be working. Only the one with cancer can make that decision.
A CAREGIVER’S CAREER Whether it is the basics of appointments, there is also the mental toll that caregiving can put on someone. Acknowledge the need for personal/professional life separation and do the best you can to not worry about the one when you are at the other.
There might be a time where your job doesn’t fit into your healthcare anymore and for one reason or another your focus can no longer be split between the two. It’s important to always remember, but especially if a resignation is involved, that your job doesn’t define you. If you aren’t able to work a part of you might feel lost, but try to remember that your occupation (just like the cancer) isn’t your identity. Take care of you first. That is and will always be your most important job.
• Be transparent to your direct supervisor about your priorities and potential schedule confilcts. • Look into FMLA leave options with your human resources department. C.A.R.E. – 123
Handling Health Insurance Many people living with cancer feel overwhelmed with the complex rules about paying for treatments and the role health insurance plays. Since knowlege is power, try to get familar with these related terms to help in your dialogues about your health insurance:
FYI:
Common Terms PREMIUMS The amount that must be paid for your health insurance or plan. You and/or your employer usually pay it monthly, quarterly, or yearly. It is not included in your deductible, your copayment or your coinsurance. If you don’t pay your premium, you could lose your coverage. COPAYMENTS (copay) is an amount you may be required to pay as your share of the cost for a medical service or supply, like a doctor’s visit, hospital outpatient visit or prescription drug. A copayment is usually a set amount rather than a percentage. DEDUCTIBLE is the amount you owe for healthcare services your health insurance or plan covers before your health insurance or plan begins to pay. COINSURANCE is your share of the costs of a covered health care service, calculated as a percent of the allowed amount for the service. You pay coinsurance plus any deductibles you owe. IN NETWORK These providers are considered covered your health insurance. They may also be called “preferred or participating-providers.”
OUT OF NETWORK May cost more to see a practitioner.
Bring a trusted friend or family member with you to meetings, or put on speaker (threeway calling) so that you have someone to help you process the information.
OUT-OF-POCKET MAXIMUM is the most you pay during a policy period (usually one year) before your health insurance or plan starts to pay 100 percent for covered essential health benefits. This limit includes deductibles, coinsurance, copayments, or similar charges and any other expenditure equired of an individual for a qualified medical expense. This limit does not have to include premiums or spending for nonessential health benefits. EXPLANATION OF BENEFITS (OR EOB) is a summary of healthcare charges that your health plan sends you after you see a provider or get a service. It is not a bill. It is a record of the healthcare you or individuals covered on your policy got and how much your provider is charging your health plan. For more terms to know visit: hhs.gov
Questions to Ask About Medical Billing It’s a good idea to make an appointment to talk with your medical team’s billing office so you can get answers to these questions: ill my insurance cover my treatment and W or surgeries?
Are my medications on my health insurance plan’s preferred drug list?
Does my health insurance company need to approve the treatment plan before I begin treatment?
What is my prescription copay for each medication?
I s the treatment facility you are recommending in my insurance plan’s network?
Will I be billed separately for laboratory tests, such as blood tests? Are they covered under my health insurance?
How much will my out-of-pocket cost be?
Do you offer any payment plans?
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What if I can’t afford the out-of-pocket cost? Will I be turned down for treatment?
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Call your insurance company’s customer service number and ask to be assigned a case manager to help coordinate/understand your healthcare costs. TO BECOME FAMILIAR WITH INSURANCE PLANS: www.bewellnm.com and www.nmcancerhelp.org FOR INFORMATION ON: Pre-existing conditions | Preventative care coverage healthcare.gov | hhs.gov KEEP TRACK OF THESE IMPORTANT DOCUMENTS: • Copies of medical records • Prescription information • Income-related records • Disability insurance • Long-term care insurance • Pensions • Social Security information • Veteran benefits (if applicable) • Bank statements • Will and advanced directive
FYI:
Networks can change. Check with your provider and call your insurance company each time you make an appointment, and to match up treatment dates with insurance bills.
Let’s Get Legal It is against the law to discriminate against workers who have disabilities such as cancer. The national laws, The Federal Rehabilitation Act of 1973 and The Americans With Disabilities Act of 1990 protect your rights as a worker. Still, you may face challenges at work if you need to take time off for cancer treatment. When you need legal advice, you have options – and almost all of them are *FREE*: NEW MEXICO LEGAL AID This program provides free legal help and advice for New Mexico residents age 54 and younger. 901 West Alameda St., Suite 20-B 87501 | 982-9886 | 866-416-1934 NEW MEXICO BAR ASSOCIATION The Legal Resources for the Elderly Program is a free, statewide helpline for New Mexico residents age 55+. LREP staff attorneys provide legal advice and brief services in most areas of civil law (Spanish-speaking attorneys available). The bar association also can set up a 30-minute case assessment appointment with a private attorney for $35. The LIPA program also works with the bar association, and may be able to arrange fee dismissal. In addition, the NM Bar Association holds free legal workshops to learn about powers of attorney, advanced care directives, estate planning, longterm care and Medicaid planning. |nmbar.org | 505-797-6005 or 800-876-6657 NATIONAL CANCER LEGAL RESOURCE CENTER This California program is staffed by attorneys and paralegals who provide free legal assistance tailored to your geographic location | 866-843-2572 TO GET CONNECTED TO INSURANCE CASE MANAGERS: Contact Stephanie Michnovicz, Program Manager, Cancer Services of New Mexico | 888-668-2766 Karen Gano, LCSW, Social Worker, CHRISTUS St. Vincent Oncology | 505.913.5731 | Karen.gano@stvin.org Eileen Patient Navigator, American Cancer Society | 505-262-6018 C.A.R.E. – 125
LIPA Clinics Free clinics are held the first and third Thursday of each month in Albuquerque. Volunteers with expertise in insurance, medical coverage, disability, legal, financial and paperwork issues are available for personal consultations in person or by phone. LIPA Referral Program This provides referrals to a variety of other groups that assist cancer patients and their loved ones with LIPA-related issues. LIPA Website nmcancerhelp.org This provides links to a wealth of resources to help with legal, insurance and financial issues.
FREE LEGAL, INSURANCE AND PAPERWORK ASSISTANCE (LIPA) Get info on the free Legal, Insurance, & Paperwork Assistance (LIPA) Program from Cancer Services of New Mexico. Utilize LIPA to get clear answers to your questions. It is the only service like it in the state, providing comprehensive assistance with cancer-related legal, insurance and paperwork issues. The LIPA program is provided at no cost to New Mexico cancer patients and survivors and their family members and loved ones.
Cancer Services of NM’s Patient Navigation program can assist patients and their families with a wide range of support services. Whether you need help with insurance-related issues or guidance/referrals concerning other nonmedical issues, CSNM is there to help. Contact: Stephanie Michnovicz, Program Manager, 1-888-668-2766, or visit www.nmcancerhelp.org
We are Here to Help You Plan Thoughtfully by Providing You with Professional Legal Guidance Proud supporters of our community!
CUDDY & McCARTHY, LLP CUDDY & McCARTHY, LLP
Attorneys at Law Attorneys at Law
1701 Old Pecos Trail Santa Fe, New Mexico 87505 (505) 988-4476
7770 Jefferson Street, NE, Suite 102 Albuquerque, New Mexico 87109 (505) 888-1335
C.A.R.E. – 126
Planning Through the Pain Gaining Peace of Mind One of the many fears that comes with cancer is the loss of conrol over other aspects of life. Planning out preferences and outlining some of their wishes is one way for someone to feel that they are in the driver’s seat. This has nothing to do with cancer. It has everything to do with taking care of business for loved ones and for YOU. Ultimately, everyone deserves to see their wishes carried out whenever that day may be. Give yourself this chance to have things the way you’d want. Why? Because you deserve it. Discussions can and should occur during routine visits to physicians or could occur during estate planning with a lawyer, or even an estate-planning accountant.
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ATTORNEYSAT-LAW A CLOSER LOOK AT LEGAL ISSUES AND PAPERWORK
PATRICK ORTIZ
PATRICIA JOHN F. SALAZAR IVES McCARTHY JR.
Be sure to have all of your estate planning documents in place and prepared by an attorney (to ensure validity under state law), including: R Will R Power of Attorney R Advance Health Care Directive R Authorization for Use and Disclosure of Protected health information When meeting with your attorney, take the following with you: R Information on assets R Person(s) you wish to benefit R Person(s) you wish to identify as your personal representative, trustee and agent R Copies of any estate-planning documents, prenuptial agreements and relevant court orders “Patient concerns about issues involving his or her job, finances, housing or insurance can negatively affect the effectiveness of the patient’s healthcare and treatment. Legal assistance may be necessary to resolve these concerns.” Santa Fe: (505) 988.4476 Albuquerque: (505) 888-1335
POWER OF ATTORNEY This is a legal document that allows you to choose a person to take care of important matters for you — for example, paying bills, managing investments and directing your medical care — if you are unable to do so yourself. LIVING WILL This is a legal document that spells out what you want to happen if you are terminally ill and can’t speak for yourself. It states whether or not you would accept artificial life-prolonging treatments. It also names a specific person to speak to the medical team on your behalf to make sure your wishes are carried out. This person is often called your “agent.” Remember to discuss your wishes with that person and make sure he or she is comfortable with the job. STANDARD WRITTEN WILL This spells out how your belongings will be distributed after your death and names a person to be the executor of the will to make sure that your wishes FYI: are carried out. It’s crucial to take care There are also many of these things that smaller decisions are so important for you and your family that a person can so that you can move make in advance if on and focus on they want to. enjoying life!
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Let It Be Known: If you don’t have a power of attorney, living will or standard written will documents in place, and have no identified “agent” a doctor is legally bound to go to these individuals, in this order, for decisions:
PREVENTING ADDITIONAL STRESS
To prevent additional stress for your spouse, domestic partner, family member, etc, ensure that the following are in BOTH of your names:
1) Spouse 2) Domestic partner 3) Adult sons and daughters
House/mortgage Vehicles Phone service Security/alarm services Utilities Retirement Insurance
4) Brothers and sisters 5) Grandparents 6) An adult friend who is familiar with your wishes
Log ins & Passwords: Write down in a safe place all logins to bills, emails, passwords to electronic bill pay, etc. Note the frequency of payment and the form of debit (automatic payment, check, etc). This will help ensure that important payments are never missed and vital information will always be easily accessible.
FYI:
DNR – ”Do not resesitate”– is an important topic to discuss with your palliative care doctor, social worker, and family so that your preference can be documented and understood. Ask questions about all of the different levels in this.
Let’s Be Honest... These conversations are not exactly what one would describe as “fun.” These topics are tough, that’s understandable. The concept of mortality is not something that humanity is too comfortable with. Many people feel unsettled talking about advanced care planning or end-of-life planning because it reminds them or manifests a fear of losing someone they care about. The truth is that no one has a “crystal ball” and therefore cannot determine anything about the future. Mortality is oftentimes a large thought and concern to many, especially when a serious illness is concerned. With that, the sooner these crucial conversations take place, the sooner you and others can move on in comfort, knowing things are handled. It’s not about having an “end of life” talk, it’s about learning what will make your loved one most comfortable on their path.
“I want you to know that I care about you and want to make sure that everything you want is carried out. Know that I know it may be hard, but that I’d like to discuss this with you when you are ready. How and when would you prefer to talk about this stuff?”
YOU:
“I know it won’t be easy for either of us. But I would really like to share with you my preferences for the future. I don’t want to keep you guessing on answers I can provide you with now. Are you comfortable with that? May I discuss this with you sometime soon?”
FAMILY MEMBER/ FRIEND:
C.A.R.E. – 128
When is the Right Time? Everyone, with a serious health condition or not, should have these items in order. It is so important for people with a life-threatening illness and their family and caregivers to be able to talk about their fears, challenges, and hopes and dreams. It’s not always about holding out hope for an unlikely cure, but instead creating days of purpose and meaning. You may have a friend or family member who can listen without giving unsolicited advice. Sometimes the best medicine is just being safe to say what you are hoping for and what you are thinking and feeling without being judged. There won’t ever feel like “the right time” to take care of this. Try to tackle these difficult conversations with loved ones: 1) I n a casual environment where you can think clearly. Steer clear of hospital beds or days where illness is heavy for these chats. 2) While you have energy, strength and feel healthy. 3) I n stages. No one says you have to handle all of these important topics in one sitting. Break it up and discuss things in bits and pieces so that it seems less overwhelming.
FYI:
If family members aren’t cooperative in your planning objectives, find a close friend or other family member to discuss it with you. FIND SOMEONE to help you document, get and give the answers you need.
4) T hen reward yourself and your loved one after you accomplish something. You just finalalized your DNR paperwork? Great – go get some ice cream! You just told your child your ideal preferences for services? Fantastic – next, listen to your favorite songs and spend time together casually! You gave details about how your finances are handled to your spouse? Awesome – relax and watch a movie with them afterward! From Those Who Know!
HOW LEGACIES CAN BE LEFT Writing own obituary or making special gifts of your possessions Make a bucket list Free-flowing journaling (without self-editing) is a very organic way to express your feelings. Phone voice memos and video allow for easy recording of messages that one wants to share with others. My mom let me know that all she wanted was to be in the comfort of her own home, surrounded by family. We documented the fun times we had through photos. Tell loved ones where they can go, look, think about when they want to feel your presence. C.A.R.E. – 129
Leaving YOUR Legacy Planning is truly a gift for those you love. It is showing those around you that you care enough to think of them far before they will ever have to make one decision for you. Everyone has a legacy that they want to pass on. Whether it be to family members or to strangers, for many the desire to be remembered and to live on in others is strong. For all of us, life is indeed short. So watch a movie before you do the dishes…stay up that extra hour talking to a friend… reconcile any problems in relationships, express gratitude to those you care about, forgive yourself and others for being less than perfect…and above all else, express to tell those you care about what they mean to you—in whatever way works best for YOU. How someone wants to be remembered, and for what, is what life boils down to for many. All of us leave a legacy every day we are alive.
Hearing “Hospice” Like the word “cancer,” when“hospice” is murmered, many thoughts and emotions can flood patients and their loved ones. Understanding exactly what hospice is and what its benefits are can help make those 7 letters feel more supportive than anything else. Hospice care provides humane and compassionate “comfort care” for people in the last phases of incurable disease so that they may live as fully and comfortably as possible. It works to ensure that one approaches the end of life with confidence, peace, comfort and dignity. This focuses on quality rather than length of life. Hospice is recommended when one’s life expectancy is approximately six months or less, given that the illness runs its predicted course. Hospice care is focused on comfort and support for the patient and the whole family. The overall goal is to make people as comfortable as they can be. Home Hospice
Facility Hospice
Home hospice is care at home, and is the most common form of hospice. In home hospice, a family member or close friend serves as the primary caregiver/nurse and is responsible for overseeing most of the care. For people without this support, organized care programs can lend a helping hand.
Facility hospice centers include hospitals, independent hospices, nursing homes and long-term care facilities
Questions to Ask Potential Hospice Providers re they certified and licensed A by a nationally recognized group, such as The Joint Commission? Do they have an outline of services, eligibility rules, costs, payment procedures, employee job descriptions and malpractice/liability insurance? re individual care plans A created for each new patient? Is a primary caregiver a condition of admission? Are there positive references about the hospice staff?
FYI:
Hospice and treatment don’t co-exist If the condition improves, one has the option to come off of hospice. If six months have passed and condition remains, one will not have to relinquish hospice care.
Do they have 24-hour access to them? How quickly can you start hospice care?
Hospice Provides... – Pain and symptom control – Supervision of care at home or in a facility – Spiritual care – Coordinated family meetings – Bereavement care for grieving loved ones after a loss
How satisfied were you upon first contact with it?
FYI:
Check with your insurance company to see which of the agencies are elibible for coverage. Talk to a social worker about more options, including Medicare.
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C.A.R.E. – 130
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WHAT IS ANTICIPATORY GRIEF?
Anticipatory grief is a feeling of grief before a death and is very common. These feelings do not mean a person is “giving up.” There comes a time in certain diagnoses where we accept that an illness is terminal and that a recovery is not a possibility. When the end of life happens is out of anyone’s control. What IS in people’s contol is how they love and support the patient and those around them. You control when and how you help, the conversations, the signs of affection and your attitude. It’s difficult, but you can take those things by the reins.
“HOPE”
Expert is
IN
BEE ZOLLO, RN
ROLE OF THE HOSPICE NURSE
“The hospice nurse is your advocate, addressing all areas of comfort, whether it be pain, skin issues, anxiety or any other symptoms that may arise. We are equally helpful for the family, addressing any concern that arises during this end-of-life experience, providing teaching and expert advice with 24 hour access to the hospice physicians and providers.”
When hospice enters the situation, hope is not lost – it ADJUSTS. A hope of recovery transforms into a hope for meaningful, quality and comfortable time together.
To learn more online from the Q & A with Bee Zollo, RN and about The Hospice Center of Santa Fe, visit careguide.info
The Hospice Center of Santa Fe
Because Every Day Matters The Hospice Center of Santa Fe is our community’s home grown, local, not-for profit hospice/palliative care provider. Care plans are managed by a team of trusted Medical Directors plus a Nurse Practitioner who not only provide hospital to home care, but who make house calls! • Guaranteed same-day follow-up • Music Thanatology Services
• Highest Quality Of Care Star Rating • Grief & Counseling Services
Let us care for you 505-988-2211 The Hospice Center C.A.R.E. – 131
Santa Fe showing they care... through carts! T
he City of Santa Fe is providing 1,000 of the Pink Carts™ to our residents. As part of the partnership Cascade, our vendor, is donating THINGS TO KNOW:
the City of Santa Fe’s new • Under automated recycling program,
•
residents will be able to put more materials into the cart. Once you have received your cart, glass will no longer be picked up curbside.
bins are broken, they can be • Ifdropped off at the Siler Road dropoff centers or placed into the cart for recycling.
• Glass cannot be put in carts should use their old • Residents recycling bins to bring glass and
other items to the recycling dropoff centers.
$5,000 to our local Making Strides Against Breast Cancer, Santa Fe program. In total, 30,000 carts will be distributed to the whole community. So far, the carts have been offered to cancer survivors first and their families. It was then opened it up to the broader community to get to a 500 cart initial distribution. To enable residents to recycle glass, and other materials, Environmental Services is setting up 3 new recycling drop-off centers. Besides, the Buckman Road recycling and Transfer Station, these centers are going to be located throughout the City. The sites are not just for single family residents, but usable by anyone in the city including small businesses and residents living in apartments.
City of Santa Fe’s
Solid Waste Drop Off Sites for Recycling
1 1142 Siler Rd, in City Offices Parking Lot 2 Between Fire Station #1 & Bishops Lodge Rd 3 Across from 5894 Lucia Lane 4 2600 Buckman Rd
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The new bins will be distributed between March 13 and March 31st, 2017
COMING: Fall 2017 The City of Santa Fe will open up the registration again in the fall to do more. The Pink Carts™ will be distributed with the rest of the carts starting March 13th. We will be delivering the carts, residents don’t need to pick them up.
Residents can find out more information on the Environmental Services website: www.SantaFeNm.gov/ESD or by calling 505-955-2200.
Volunteer for the Cause YOU Can Make a Difference Throughout New Mexico, there are wonderful opportunities to make a difference in people’s lives and advance the work to eliminate cancer. Many volunteers have somehow been affected by a diagnosis and have chosen to give back to others in the fight. All people interested in making a difference in the lives of others are encouraged to get involved. Volunteers make a big difference to a lot of patients. They not only offer a warm blanket and snacks, but many are also cancer survivors. The work they do is critical in contributing to the quality of life for others. Everyone is so grateful for their help and their insight. Join a local team of caring ambassadors!
Cancer Foundation for New Mexico in Santa Fe Volunteers at the Sweetheart Auction in February Personal support for patients in the treatment areas Fluent Spanish speakers to help translate during exams and treatment To volunteer, contact Caroline Owen, caroline@cffnm.org 505-955-7931, ext. 3
Cancer Services of New Mexico Volunteers and exhibitors at the Family Cancer Retreats (spring and fall) To volunteer, contact Mike Capeless, Mike@cancerservicesnm.org 505-239-4239
Cancer Action Network ACS CAN Volunteers advocate to make meaningful change nationwide by meeting with legislators, planning events and encouraging new membership.
American Cancer Society Road to Recovery program Drivers are needed in Santa Fe to drive cancer patients to and from their treatments. To volunteer, contact Shirelle Besse. Shirelle.Besse@cancer.org 505-262-6016 Making Strides Against Breast Cancer Volunteers can start or join a team, walk as an individual or help plan the event. To volunteer, contact Jessica Duncan, Jessica.Duncan@cancer.org 909-534-2565 Relay for Life Help plan and organize events in the local community. To volunteer, contact Manuel Luna, Manuel.Luna@cancer.org 505-262-6022 Distinguished Event (Black & White Ball) Help plan and produce the local galas through engaging community, business and health care leaders to help raise funds for research and programs. Volunteers can also help organize live/ silent auctions or help on the day of the event. To volunteer, contact Lisa Spencer, Lisa.Spencer@cancer.org 505-262-6012
To volunteer, contact Lacey Daniell, Lacey.Daniell@cancer.org 505-262-6014
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unity
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Reasons Why People May Volunteer... ❤ Fills vacant time ❤ People depend on me ❤ In honor of a loved one ❤ Someone I care about asked me to ❤ It’s a cause you believe in ❤ The need matches my skillset ❤ Required amount of hours for the job ❤ It makes you feel helpful and gives an extra purpose ❤ You enjoy seeing the projects or people impacted by their actions ❤ For my resume People volunteer for a variety of reasons. Regardless of the intent volunteers seem to find “takeaways” from their experience.
Benefits of Volunteering... ❤ Intrinsic satisfaction knowing you’re helping a project/others
❤ Comraderie with other volunteers ❤ Productive use of time ❤ Builds transferrable skills ❤ Meeting new people ❤ Helps me tribute someone I care about
❤ Provides memorable moments
C.A.R.E. – 135
Save the Date Throughout the year there are many events that benefit cancer awareness, programs, research and services. There are also activities that are in honor of and meant to show tribute to the cause. Grab a group of friends and show you care in 2017 by attending or promoting any of these events!
February
June National Cancer Prevention Month
February 4, World Cancer Day
April Spring Family Cancer Retreat – Albuquerque *FREE* (Cancer Services of NM) April 21-23 Marriott Pyramid North Hotel Provides a weekend of education, reflection and rejuvenation for adult cancer patients/survivors, their family members and primary caregivers in a relaxing environment 505-239-4239 www.CancerServicesNM.org Relay for Life – Las Cruces NMSU Dona Ana County April 21-22 6 p.m.-6 a.m. www.relayforlife.org/lascrucesnm 3rd Annual 5k Rudi Run – Las Cruces April 29 Memorial Stadium NMSU The purpose of the race is to raise awareness and funds for spindle cell sarcoma at UNM Comprehensive Cancer Center kevinrudifoundation.com 505-717-5575 Relay for Life – Portales April 29 10 a.m.—10 p.m. www.relayforlife.org /portalesnm C.A.R.E. – 136
Polly’s Run – Albuquerque June 4 Annual 5K and Kids’ K road race honoring Polly Rogers and all the loved ones we have lost to pancreatic cancer. The purpose of the race is to raise awareness and funds for pancreatic cancer research at UNM Comprehensive Cancer Center www.pollysrun.com Relay for Life – Clovis June 10 10 a.m.-10 p.m. www.relayforlife.org/clovisnm Relay for Life – Gallup June 16, 2017 6 p.m. www.relayforlife.org/gallupnm Black & White Ball – Santa Fe (American Cancer Society) Fundraiser June 17 Fundraiser/Gala to support American Cancer Society programs & research (food, dancing, live and silent auctions) sfbwb.org Relay for Life – Los Lunas June 23-24 6 p.m.- 6 a.m. www.relayforlife.org/loslunasnm Purple Light – Albuquerque (Pancreatic Cancer Action Network) Date TBD purplelight.org
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July
November Relay for Life – Santa Fe (American Cancer Society) July 22nd
August
Light The Night – Albuquerque (Leukemia & Lymphoma Society) November 4th Celebrates and commemorates lives touched by blood cancer lightthenight.org/nm/
Relay for Life – Albuquerque August 4—5 7 p.m. relayforlife.org/ albuquerquenm Relay for Life – Los Alamos August 18 relayforlife.org/losalamosnm
~COMING~February 2018 Sweetheart Auction – Santa Fe (Cancer Foundation for New Mexico) Fundraiser/Gala to support Cancer Foundation for New Mexico’s programs & services for local families (live and silent auctions) cffnm.org/sweetheart-auction/
September Fall Family Cancer Retreat – Albuquerque *FREE* (Cancer Services of NM) September 8-10 Marriott Pyramid North Hotel Provides a weekend of education, reflection, and rejuvenation for adult cancer patients/survivors, their family members and primary caregivers in a relaxing environment 505-239-4239 CancerServicesNM.org
October Making Strides Against Breast Cancer – Santa Fe (American Cancer Society) October 8 Celebrates and commemorates lives touched by breast cancer MakingStridesWalk.org/SantaFe Making Strides Against Breast Cancer – Albuquerque (American Cancer Society) October 28 Celebrates and commemorates lives touched by breast cancer MakingStridesWalk.org/AlbuquerqueNM
SPOTLIGHT LYNN MILLER “My father was a 30 year cancer survivor, and he truly was and is my inspiration for coninuing to have a team every year. I’ve captained a team for 15 years and raised more than $83,000. My comfort after his passing, comes from participating in Relay for Life every year. Making a difference in this way means a lot to me.” To read more online on Lynn Miller’s efforts: visit careguide.info
C.A.R.E. – 137
Cancer in the Capitol ACS CAN, the nonprofit, nonpartisan advocacy affiliate of the American Cancer Society, supports evidence-based policy and legislative solutions designed to eliminate cancer as a major health problem. ACS CAN works to encourage elected officials and candidates to make cancer a top national priority. ACS CAN gives ordinary people extraordinary power to fight cancer with the training and tools they need to make their voices heard.
In New Mexico ACS CAN advocates for cancer prevention, early detection and improving quality of life for cancer patients and their families. Some examples include prohibiting the use of indoor tanning beds by minors, funding for tobacco prevention programs and increasing access to palliative care services at the time of diagnosis.
Nationally ACS CAN works on ensuring cancer patients have access to screenings and treatment. ACS CAN is seeking volunteers to help fight back against cancer.
Staying Connected TO STAY UPDATED ON INITIATIVES:
“LIKE” @ACScan on Facebook
Follow @ACSCANnm on Twitter
Visit acscan.org/nm
Contact: Lacey Daniell lacey.daniell@cancer.org 505-262-6014
C.A.R.E. – 138
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Findings for the Future Every day, researchers and grantees are working to find cancer cures – and better ways to treat and prevent the disease. Below are highlights from American Cancer Society’s 10 recent cancer research projects.
10 Recent Cancer Insights 1. CANCER DEATH RATES DOWN The rate of death from cancer in the United States continues to decline among both men and women, among all major racial and ethnic groups and for the most common types of cancer. Society researchers estimate that 1.5 million cancer deaths have been averted since the early 1990s due to effective early detection, cancer treatment and cancer prevention efforts. 2. TINY TECH A device just one nanometer in diameter that can be inserted under the skin, hopefully to signal the onset, progression, or spread of cancer, and alert doctors quicker – is under development. 3. INVESTIGATING IMMUNOTHERAPY The cancer research world is dedicating increasing energy to a rapidly evolving type of treatment that has the potential to be more effective – and in some cases less toxic – than many of today’s existing options. 4. NEW LUNG CANCER MUTATIONS FOUND The identification of four new types of genetic mutations in the most common form of lung cancer could open the door for targeted treatment options for more patients. 5. GETTING BREAST CANCER CELLS TO STOP MULTIPLYING Ways to lull breast cancer cells into a permanent sleep, which could potentially stop a tumor in its tracks, is getting investigated. 6. VITAMIN D-BASED CANCER DRUGS Early research suggests that vitamin D, a compound the human body makes naturally when exposed to the sun and essential to healthy bones, has the potential to be used as a starting point in the creation of new drugs to treat skin cancer and basal cell cancer.
C.A.R.E. – 139
7. LUNG CANCER DREAM TEAM FORMED More than 35 of the top lung cancer researchers in the United States, dubbed the lung cancer Dream Team, are coming together to work on one of the most difficult-to-treat lung cancers – those that have a mutation in a gene called KRAS. The Dream Team is funded by a $20 million grant from the American Cancer Society and Stand Up To Cancer (SU2C). 8. INCREASING COLON CANCER SCREENING RATES Research is currently underway to help health systems nationwide increase their colorectal cancer screening rates – and help save more lives. 9. PUTTING CANCER DATA IN THE HANDS OF DECISION MAKERS The American Cancer Society, the International Agency for Research on Cancer and the Union for International Cancer Control collaborated on “The Cancer Atlas, Second Edition,” anda new interactive website – cancer.org/canceratlas – to allow global leaders to better understand the cancer landscape and take action to reduce the burden worldwide. 10. FIGHTING BACK AGAINST TOBACCO Fighting back against the tobacco epidemic: The American Cancer Society and the World Lung Foundation launched “The Tobacco Atlas, Fifth Edition, and its companion website, tobaccoatlas.org Source: Source: ©2015, American Cancer Society, Inc. No. 030935, www.cancer.org
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IN THE WORKS, LOCALLY
Personalized and precision medicine is expanding. New technologies are being designed to help us identify molecular targets in cancer cells. As such, new therapies are are being developd specifically for those targets. . As therpies become more specific, there is hope that the effect on normal tissue is minimized while being more effective. With chemotherapy, it is unknown who will respond and who won’t. Personalized medicine gives the ability to not only spare normal tissue, but also increase the individual’s response rate to the chosen therapy.
IMMUNOTHERAPY EFFORTS INCREASING:
Check point inhibitors are a recent development that aim to utilize a patients own immune system
to attack cancer cells. If the body recognizes a tumor as foreign, then the goal with immunotherapy is to improve immunedetection and destruction of tumors. Historically, cancers that are more differentiated and have more mutations, have been more aggressive, and more resistant as they don’t respond to the common treatments. The benefit of immunotherapy is that it enables the immune system to recognize specific mutations. Cutting-edge research is vital in order for us to identify more targets and develop new therapies that will hopefully lead to new and more effective treatments.
Resources... ~ CANCER CENTERS IN NORTHERN NEW MEXICO ~ Santa Fe: CHRISTUS St. Vincent Regional Cancer Center Cancer Institute of New Mexico | New Mexico Cancer Care Associates Albuquerque: Breast Cancer Research Center Dermatoloty and Skin Cancer Center of New Mexico New Mexico Cancer Center UNM Comprehensive Cancer Center UNM Cancer Research Facility MD Anderson Radiation Treatment Center | Kaseman Presbyterian Hospital C.A.R.E. – 140
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State Employees Credit Union is proud to support cancer education & research in the State of New Mexico.
800.983.7328 | SECUNM.ORG
LO CA L C O N F I D E N C E
NORTHERN NEW MEXICO’S PREMIER
ALL-INCLUSIVE CANCER CENTER
DELIVERING COMPREHENSIVE, COMPASSIONATE, STATE-OF-THE-ART CARE TO NORTHERN NEW MEXICO CANCER PATIENTS. CHRISTUS St. Vincent Regional Cancer Center offers superior care through the latest medical technology and highly-trained providers working in a collaborative care environment. When facing cancer, family and a strong support network are key to aiding in recovery. Treatment at CHRISTUS St. Vincent means patients and their families have access to the best resources while receiving treatment close to home. With advanced technology and a newly remodeled chemotherapy suite, our Cancer Center offers our community not only superior care but additional services, such as nutritional guidance, social work, acupuncture, and palliative care.
FOR MORE INFORMATION OR TO MAKE AN APPOINTMENT CALL
505.913.8900 CHRISTUS ST. VINCENT REGIONAL CANCER CENTER 490A WEST ZIA ROAD • SANTA FE, NM 87505 WWW.STVIN.ORG