C.A .R .E.
CANCER AWARENESS RESOURCE & EDUCATION GUIDE
NAVIGATING CANCER Therapeutic activities Household essentials Insurance & financial options Provided by the Santa Fe New Mexican with Christus St. Vincent
PLUS
• Surviving & Thriving • Caregiver Guidance • Supporting a Friend
and a personal 2015 appointment calendar!
“ We would have gone anywhere to find the best care. We just happened to find it right here.” — Lawrence G. thyroid cancer patient
“We would have traveled anywhere to find the most talented doctors with the best resources. We were blessed to have found them close to home at the UNM Cancer Center. Learn more about my story at UNMHSLifeStories.org and cancer.unm.edu.” THE OFFICIAL CANCER CENTER OF THE STATE OF NEW MEXICO A NATIONAL CANCER INSTITUTE CANCER CENTER 2 C.A.R.E. GUIDE
WHY C.A.R.E.?
Everyone, in some form, has heard the “c” word and has a certain kind of relationship with it. Some may have experienced cancer themselves, some may know about being a caregiver, others may closely know someone with the disease or might just be aware of the universal efforts towards the cause. Regardless of where you lie on this spectrum, this guide is for you. C.A.R.E. hopes to educate the curious, comfort those in the fight, and celebrate others. It hopes to make a caregiver feel understood and provide guidance to a supportive friend. The truth is cancer never affects just one person. Although there is no right or wrong way to deal with such a diagnosis, it is important to acknowledge that there are resources and support available.
no matter who you are or what your situation is, you are never alone in your experience. For, this magazine is about something bigger than ourselves.
You are invited to read C.A.R.E. from front to back or simply skip to the sections of your choice. It will lead you from the basics of cancer, to taking you through the every day of navigating the disease by use of facts, tips, and testimonies from those who know. This won’t replace the advice of your personal medical team, nor can it be a complete “manual” to cancer — we understand there can be no such thing. C.A.R.E. is about communicating that
C.A.R.E. is especially dedicated to those who have been, who are, and those who will be affected by cancer. Thank you for reading. May you find strength and comfort in your journey.
When it comes to cancer, or anything else in life, it can often be best when approached as a team. This effort would have never been possible without the collaboration of so many: the local nonprofits, professionals, contributing Partners & Supporters, and especially those who generously expressed their candid expertise and vulnerable opinion for this guide. Your guidance truly made a difference in the conception of C.A.R.E. This resource aims to bring awareness the best way we know how…together.
Always, Kathryn Lopez C.A.R.E. Project Manager
c.a.r.e. Made possible by: Partners: New Mexico Coalition for Healthcare Quality
Supported by:
produced in collaboration with:
Give back to these nonprofits by donating online at
santafenewmexican.com/care c.a.r.e. is a publication of:
C.A.R.E. C ANCER AWARENESS RESOURCE & EDUC ATION GUIDE
Knowledge is power
PUBLISHED FEBRUARY 22, 2015 Cover
Elspeth Hilbert
Owner
Robin Martin
Publisher Tom Cross
Editor
Ray Rivera
Advertising department
6 Cancer 101 14 Preventive care 16 Early detection 18 Looking at the numbers 20 Beginning the journey 22 Who’s who 24 Words from those who care
Living with cancer
advertising director Heidi Melendrez 505-986-3007
C.A.R.E. project manager Kathryn Lopez lead designer Joan Scholl
Design
Elspeth Hilbert, web & business development Monica Taylor Rick Artiaga
Advertising sales
retail sales manager Art Trujillo Vince Torres Mike Flores Wendy Ortega Chris Alexander Amy Ingram
26 Living with cancer 28 Treatment related side effects 30 Combat fatigue and chemo brain 33 Tracking sheet 34 Eating through it all 37 Get support 39 Get connected 39 General resources
Surviving and thriving
Technology
technology director Michael Campbell
44 Surviving and thriving 46 Other forms of therapy 49 Cancer in children
Support and community
Web
digital development Natalie Guillén www.santafenewmexican.com
Production
operations director Al Waldron assistant production director Tim Cramer prepress manager Dan Gomez press manager Larry Quintana packaging manager Brian Schultz
52 Talking with your child 54 Looking your best 56 Let’s go shopping 58 Caring for the caregiver 62 Supporting a friend/loved one
Practical matters
Distribution
66 Home health care, palliative care & hospice 69 Cancer costs 71 Insurance 72 Legal matters 73 Putting your house in order 75 I have a question 77 I want to help 78 Calendar
circulation director Michael Reichard distribution coordinator Reggie Perez
Address
office: 202 E. Marcy St. hours: 8 a.m.-5 p.m. Monday-Friday advertising information: 505-995-3852 delivery: 505-986-3010, 800-873-3372 for copies of this magazine, call 505-428-7622 or email rperez@sfnewmexican.com
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C.A.R.E. GUIDE
P ROUD
TO
S UPPORT
CHRISTUS ST. VINCENT Regional Cancer Center St. Vincent Hosp pital Foundation has sup pported the health care needs of Northern New Mexico for over 35 years.
440 St. Michael’s Drive • Santa Fe, New Mexico 87505 (505) 913-5209 C.A.R.E. GUIDE
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Cancer 101 Getting down to the basics of Cancer Today, many people are cancer survivors or are living with cancer, and many more are touched by their friends and loved ones’ experiences. Although cancer is prominent in society, there still maybe questions surrounding it. Use this section to help you feel more confident in the subject matter and understand certain components of cancer. Knowledge is power The more you know about cancer, the less overwhelming a diagnosis may be.
How Does CanCer start? Cancer is the general name for a group of more than 100 diseases. The body is made up of trillions of living cells, and normal body cells are generally dominant, growing, reproducing and dying in an orderly way. Cancer starts when abnormal cells — which are always present — begin growing rapidly and invading other, normal cells. DNA is in every cell and it directs all its 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 with the same damage. Although DNA damage may result from something obvious like cigarette smoking or sun exposure, it is actually rare to know exactly what caused any one person’s cancer.
wHat are tHe Different types 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. They would be treated in the same ways too. The same is true for breast cancer that has spread to the bones, for example. It is always called breast cancer.
Anyone who is thinking of refusing cancer treatment should talk with the medical team doctor to clearly understand the likely outcomes of both treatment and non-treatment before making a decision.
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C.A.R.E. GUIDE
Cancer 101 How is cancer treated and wHy are different types treated differently? Different types of cancer can behave very differently, so there are different types of treatment for each specific kind. The cancer care team will discuss the treatment for each person. Factors that inFluence type oF treatment are: • Type of cancer • Stage (amount) of the cancer • Person’s overall health • Likely side effects of the treatment • The probability of curing the cancer, controlling it to extend life, or relieving symptoms. Surgery, chemotherapy, and radiation are the three main types of cancer treatment. Any of these, alone or in combination, may be the best treatment. Surgery Surgery is often the first treatment used if the cancer can be removed from the body. Sometimes only part of the cancer can be removed. Radiation or chemotherapy might be used to shrink the cancer before or after surgery. Chemotherapy Doctors use chemotherapy or “chemo” drugs 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 in the bloodstream. They can reach cancer cells that may have spread away from the tumor. Radiation therapy Radiation therapy is treatment with high-energy rays (such as x-rays) to kill or shrink cancer cells. The radiation may come from outside the body, called external radiation, or from radioactive materials placed right into the tumor (internal or implant radiation). Getting external radiation is a lot like getting an x-ray. It’s doesn’t hurt, but it can cause side effects.
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Other kinds of cancer treatment you might hear about include targeted therapy, stem cell or bone marrow transplant, and immunotherapy. Hormone therapy is another type of treatment that’s sometimes used to treat certain kinds of prostate and breast cancers. If undergoing any kind of surgery, discuss anesthesia options and recommendations with your doctor. C.A.R.E. GUIDE
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tips
Cancer 101 what do cancer ‘stages’ mean? The process of finding out whether cancer has spread and if so, how far, is called “staging.” Clinical staging is an estimate of the extent of cancer based on physical exam, biopsy results, imaging tests and is essential in determining how it will be treated. The “TNM staging system,” which is used most often, is typically based on three key pieces of information. T refers to the main tumor (its size and/or whether it has grown into nearby areas). N describes whether the cancer has spread to nearby lymph nodes. M shows 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 the cancer has spread. A higher number means a more advanced cancer. stage 0 is cancer in which cancerous cells have not invaded neighboring tissue. Some cancers never progress beyond this stage. stage I is localized cancer, in which a single tumor has crossed the cancerous cell’s membrane. stage II is cancer in which the tumor has spread to nearby tissue but has not spread to lymph nodes.
stage III is cancer in which cancer cells have reached nearby lymph nodes and may have traveled through the lymphatic system into the bloodstream. stage IV is metastatic cancer, in which the cancer cells have entered the bloodstream and spread to distant organs.
Numbers and titles surrounding your cancer help determine your care. Try not to get caught up in the figures. Instead, put more focus on living your daily life the best way you can. 8
C.A.R.E. GUIDE
Cancer 101 Glossary of terms Concepts and the language that come in cancer related discussions can seem foreign to most. Get familiar with some basic terms to help understand the “lingo” used: anesthesia The loss of feeling or sensation as a result of drugs or gases. General anesthesia puts you into a deep sleep so you don’t feel potential pain during a surgery. Local or regional anesthesia numbs only a certain area. Biopsy A procedure that removes a piece of tissue from a person’s body so that a doctor can look at it under a microscope to see if a person has cancer/what kind. Carcinoma A cancer that begins in the lining layer of organs. Most cancers are carcinomas. Complete Blood Count (CBC) A count of the number of cells in a given sample of blood. Red blood cells, white blood cells and platelets are most often counted for this lab test. Diagnosis Identifying a disease by its signs or symptoms, and by using imaging tests, lab tests, or biopsy. For most types of cancer, a biopsy is needed to be sure of the diagnosis. Genetic testing Tests that 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, but for people with certain types of family history. Genetic counseling should be part of the genetic testing process. imaging tests Methods used to make pictures of internal body structures. Some imaging tests used to help detect or stage cancer are x-rays, CT scans, MRI, PET scans and ultrasound. immune system The complex system by which the body resists infection by germs, such as bacteria or viruses, and rejects transplanted tissues or organs. The immune system may also help the body fight some cancers. lesion An area of abnormal body tissue, which may be a lump, mass, tumor, spot or change in the way the skin looks or feels. lymph node A small, bean-shaped collection of immune system tissue found throughout the body along lymphatic vessels. 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. Sometimes called “lymph glands.”
*metastasis The process of cancer cells spreading to other parts of the body where they can grow and form new tumors. nodule A small, solid lump that can be felt or seen on an imaging test. oncology The branch of medicine concerned with the diagnosis and treatment of cancer. photocoagulation or photo ablation Use of a laser beam to heat up and kill cancer cells. Most often used to relieve blockages caused by tumors rather than to cure cancers. prognosis A prediction of the course of the disease; the outlook for the chances of survival. protocol A detailed, standard plan that doctors follow when treating people with cancer. recurrence/relapse The return of cancer cells and signs of cancer after a remission. remission A period of time when the cancer is responding to treatment or is under control. In complete remission, all the signs and symptoms of the disease go away and cancer cells can’t be found with any of the tests. Partial remission is when the cancer shrinks but does not completely go away. Remission can last anywhere from many weeks to many years, and one person could have many remission periods if there is a recurring cancer. resection Surgery to remove part or all of an organ or other structure. seroma A lump or swelling that’s caused by a build-up of clear fluid and is not cancer. survivor Not generally used as a medical term, survivor can have different meanings when applied to people with cancer. Some people use the word to refer to anyone who has ever been diagnosed with cancer. Some people use the term to refer to someone who has completed cancer treatment. 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. continued on next page
Cancer 101 Glossary of terms
continued
Quality of life Overall enjoyment of life, which includes a person’s sense of well-being and ability to do the things that are important to him or her.
terminal In medicine, generally understood to mean that the disease can no longer be effectively treated or cured. therapy Also called treatment. Any measures taken to fight or treat a disease. transfusion Blood or blood products that are given into a vein (intravenous or IV). Most such products are taken from unrelated donors and tested for disease before use, but a person can donate their own blood ahead of time to be given during certain planned surgeries or procedures. tumor An abnormal lump or collection of cells, which can be benign (non-cancerous) 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 the number of these cells and make a person more likely to get infections. X-ray One form of radiation that can be used at low levels to make an image of the body or at high levels to kill cancer cells. For more terms to know visit: www.cancer.org/cancer/cancerglossary/index SOURCE: American Cancer Society
Ultrasound or Ultrasonography A test in which high-frequency sound waves are used to make pictures of the inside of the body. The sound wave echoes are picked up and displayed on a computer screen.
Cancer Seminars
Los Alamos Council on Cancer
Cancer Corner
Providing education about cancer, and supporting cancer prevention and treatment in Los Alamos, Rio Arriba, and Northern Santa Fe Counties and the Jemez community.
Resources For Local Libraries
Skin Cancer Screening
LACC Website Facebook
Cancer Support
Learn more about the Los Alamos Council on Cancer programs www.LosAlamosCouncilOnCancer.org 10
C.A.R.E. GUIDE
Healthier communities begin with a healthy you. Our doctors, nurses, technicians and staff don’t work here because it’s a job. We do what we do because we’re driven to help people. We’re dedicated to caring for more than 60,000 people across New Mexico at forty health centers. Because nothing is more valuable than your well-being.
pmsnm.org | 800.477.7633
C.A.R.E. GUIDE
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Innovative Care for Women
Comprehensive Breast Cancer Care:
Bringing Women Hope CHRISTUS ST.VINCENT Breast Institute is a comprehensive breast center delivering state-of-the-art diagnosis and treatment. Our team of highly trained caregivers specializing in breast cancer work closely with medical and radiation oncologists at our Cancer Center to provide complete cancer care.
Melody Paulishak, DO Board Certified Breast Surgeon
Through collaborative, compassionate care we are focused on helping women live longer, healthier, happier lives, free of cancer.
To book an appointment call
(505) 913-3101
William Dougherty, MD, FACS Board Certified Plastic Surgeon
CHRISTUS ST. VINCENT Breast Institute 490-A WEST ZIA RD., SUITE 200 | SANTA FE, NM 87505 12
C.A.R.E. GUIDE
Treating the Whole You
Holistic Health & Wellness:
Care for Mind, Body and Spirit CHRISTUS ST. VINCENT Holistic Health and Wellness offers a variety of resources to both our patients and their families to ensure that we are meeting people’s physical, emotional, psychological, and spiritual needs. Our services include health and nutrition information, alternative medicine options, various assistance programs and support groups. We also offer exercise classes, yoga, and acupuncture, which are all open for immediate participation.
Schedule an appointment to learn how we can help you take control of your health and wellness plan.
(505) 913-3820 CHRISTUS ST. VINCENT Holistic Health & Wellness 490 B WEST ZIA RD., SUITE 4 | SANTA FE, NM 87505 C.A.R.E. GUIDE
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Smart steps to help prevent cancer
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.
Reach a healthy weight and keep moving 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 for an occassional treat. Adults should aim for about 2 ½ hours of moderate exercise each week, and children should get an hour every day. All ages should get strenuous exercise at least three days a week.
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 ½ ounces of 80-proof distilled spirits.
TIP
It is crucial to follow recommendations for cancer screening tests to attempt to catch cancer as early as possible. 14
C.A.R.E. GUIDE
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. Get a clinical breast exam by a doctor or nurse every three years, then yearly beginning at age 40. 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 test and HPV 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 had prostate cancer before age 65 should talk with a doctor about testing starting at age 40. Get annual mammograms starting at age 40.
50-65+ years old At age 55, talk to a doctor about your smoking history and about a low-dose CT scan to screen for early lung cancer. Get colon cancer tested 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 getting colon cancer tested at age 50, if you’re at average risk.
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rovides dation p n u o F l a ospit r incent H nd othe The St. V iopsies a b , s sured m in ra n mmog ho are u w e s o free ma for th le tic tests Affordab diagnos der the n u t Karl fy c li a ’t qu to conta and don rovider p r for u o e y g arran t. Ask Care Ac 3-5409 to 1 -9 5 0 5 n at Ferguso ation. z ri o the auth ilable at s are ava g in n e re c c a n ce r s Fair Free skin s Health o m la A s o L l a u ann . ber 25th Septem SOURCE: American Cancer Society C.A.R.E. GUIDE
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Tips for early detection Become familiar with your body, acknowledge when it changes, and get a checkup. 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.
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.
TIPS
No symptom should be ignored or overlooked, especially if it has lasted a long time or is getting worse. If someone notices and remarks on changes in the way you look or act, take it as an expression of concern, and get yourself checked.
Signs and symptoms can include • Unexplained weight loss of 10 pounds or more • Fever that lasts a long time • Extreme fatigue, weakness or dizzy spells • Unexplained pain anywhere in the body, such as a persistent headache • Nagging cough or hoarseness • Unusual skin changes, such as darkened, yellowish or reddened skin, itching, or excessive hair growth • Recent color/size/shape change of a wart or mole • Red or thickened skin on the breast • Thickening or lump in the breast or other parts of the body • Change in bowel habits or pain while urinating • Indigestion or trouble swallowing • Sores in the mouth or elsewhere that do not heal • Any long lasting mouth changes, such as white patches inside the mouth or white spots on the tongue • Unusual bleeding or discharge • Blood clots in the veins or legs These are the more common signs of a possible cancer. If you have any of these, don’t panic, but DO see your doctor or nurse practitioner and ask for a thorough screening. SOURCE: American Cancer Society 16
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Los Alamos (1943-1995) 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 2,000 very happy families. $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 Part E benefits (impairment or survivor awards).
Photos courtesy of LANL
Thank You, National Lab Workers with Cancer Sandia (1946-1994)
Albert B. Frowiss, Sr.
858.756.1494
7 days/7 nights, phone right now! Internet? Type in FROWISS.ORG
Email: FROWISS@FROWISS.ORG P.O. BOX 909, RANCHO SANTA FE, CA 92067 C.A.R.E. GUIDE
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Looking at the Numbers totAl populAtion of new mexico: 2.09 million (2013) new mexico rAnkS 49th Among the 50 StAteS with regard to cancer incidence rates for all types of cancer, combined.* cASeSof ofvAriouS VAriouS CAnCErS cAncer ininnew mexico CASES nEw MExiCo ORAL CAVITY AND PHARYNX ESOPHAGUS STOMACH COLORECTAL LIVER & IHBD PANCREAS LUNG & BRONCHUS CUTANEOUS MELANOMA BREAST CERVIX UTERI UTERUS OVARY PROSTATE BLADDER kIDNEY & RP BRAIN & NERVOUS SYSTEM THYROID NON-HODGkIN LYMPHOMA MYELOMA MYELOID/MONOCYTIC LEUkEMIA other types of cancer
0
300
600
900
Number of Cases
1200
1500
totAl: 8901
AgeS of new mexicAnS with cAncer NuMber of cases
0-21 yrS: 105
22-39 yrS: 383
40-64 yrS: 3688
65+ yrS: 4726
all graphs based on most recent information of actual counts from the time period 2008-2012
the big picture
cASeS of cAncer • Nearly 14.5 million Americans, half of all men and by gender in new mexico nearly one third of all women, will face a cancer NuMber of cases
diagnosis in their lifetime.
49% women 4342 51% men 4554
• 30% of all u.S. deaths in cancer can be attributed to smoking. • More than 1.3 million lives have been saved between 1991-2010 due to research and breakthroughs. • 1,231,139 visits to cancer.org made by New Mexicans.
5 uNkNowN
source: american cancer society
percentAge of new mexico cAncer cASeS by AnceStry 62% white | 29% hispanic | 5% american indian | 4% Other *The percentage of cancer incidence rates in New Mexico needs to be interpreted in the context of the relatively low rates of cancer among Hispanic and american Indians in our state. Hispanic and american Indians together comprise approximately 57% of New Mexico’s population. New Mexico anglos (non-Hispanic whites) have cancer rates that are similar to non-Hispanic whites in other areas of the country, but represent only about 40 % of the state’s population.
moSt frequent cAncerS in north centrAl new mexico Rio Arriba 167
Taos 155
breASt cAncer proStAte cAncer NuMber of cases
Los Alamos 93
Sandoval 574
Santa Fe 697
Mora 23 San Miguel 126
Bernalillo 2855 statistics provided by university of New Mexico Tumor registry
Beginning the journey
“
You never know how strong you are until you are dealt with unimaginable fear. So, being strong is the only way to be. Be scared, be strong, be determined... God is with you.” — CAROLYN SANDOVAL, CANCER SURVIVOR
Cancer truly is a journey, one with highs, lows and unpredictable twists and turns along the way. It also can be a journey that ignites growth, builds strength and helps everyone affected by it to reflect on what is most important to them.
On the journey, remember these important points: • Balance is important. • Most people survive cancer. • You’re not alone. There are many others who are going through the same process and many who have already done so. • Knowledge is power. Learn as much as you can and seek out resources to help you.
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?
Basic questions to ask
Asking your doctor questions is an important part of managing your care. Your specific questions will be based on your unique situation and they may change over time. These are the most common questions: • What type of cancer do I have? Where is it located? Has it spread? • What is the stage of my cancer? What does this mean? • What is my prognosis, or chance of recovery? • How much experience do you have treating this type of cancer? Should I get a referral to someone with more of a specialty? • What are the treatment options for my symptoms? Which treatments, or combination of treatments, do you recommend? Why? • What diagnostic tests or procedures will I need? How often? • When will I get the results, and how will I receive them? Over the phone or at my next appointment? • What is the expected timeline for my treatment? How soon will I begin it? Where? • What are the short- and long-term side effects of this treatment? • How will you treat side effects that I experience during treatment? • How can I keep myself as healthy as possible during treatment? • Will I be able to work during treatment? • What lifestyle choices should I begin to make right now? • What resources and people should I reach out to right now, and in what order? • Should I consider genetic testing or clinical trials? • Is there anything else I should be asking? In the early stages of your diagnosis it is beneficial to seek multiple opinions and properly chose your medical team. See Getting a Second Opinion on next page.
A word about clinical trials A clinical trial tries to answer scientific questions and find better ways to prevent, treat or diagnose cancer. Clinical trials test the safety and effectiveness of new drugs, new drug doses, new approaches to surgery or radiation therapy and new combinations of treatments. If this interests you be sure to ask about complete details, including risks and benefits. Life will never be the same from this point forward for you or those close to you. Acknowledge this right away. And remember that, even with the changes, you have the power to create a new, more intentional version of your life. You can’t always control your feelings, but you can set a personal goal to manage them in a positive way.
SOURCES: cancer.net, nmcancercare.org, National Cancer Institute C.A.R.E. GUIDE
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TIPS
“Hello, I’m your...
Who’s who?
… Primary Care Provider. I might have been the one to detect your cancer. I help manage other chronic health conditions, keep you up to date on your health care maintenance, and work with you to see who else needs to be involved in your health care team.”
Timothy Lopez, MD, ChrIsTus st. Vincent regional Medical 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.”
… Radiation Oncologist. I specialize in radiation in the treatment of cancer and work closely with other physicians as part of your multi-disciplinary medical team.”
scott herbert, MD, ChrIsTus st. Vincent Cancer Center
… Psychiatrist. I am a doctor who wants to help you navigate through this mentally. If you feel depressed in any way, schedule an appointment with someone like me and I will work with you through medicine and talk therapy.” Donald shina, MD, ChrIsTus st. Vincent regional Medical Center … Surgeon. For those that need to have a part of the body removed or repaired, or any other kind of surgery, I will take care of the operation.” Getting a second opinion At some point during your treatment, you may find that you want to talk with another doctor.
stephanie Fine, MD, uNM Cancer Center
Some people find it hard to tell their doctors that they’d like a second opinion. Know that it is common for patients to get a second opinion, and most doctors are comfortable with the request. Try saying: “Before we start treatment, I’d like to get a second opinion. Will you help me with that?”
“If you had my type of cancer, who would you see for a second opinion?” “I’m thinking of getting a second opinion. Can you recommend someone?” You can also find the new doctor on your own. Once you have decided who you will see, ask doctor’s office staff for: your medical records, original x-rays, and all test results. You can have records sent or you can retrieve and take to second doctor yourself. This is your health, and your body, so ensure that you feel taken care of to your satisfaction. 22
C.A.R.E. GUIDE
Meet your wellness team! … Pharmacist. I will be called to prepare your medicine for you. Feel free to ask me questions regarding your medication.” … Nurse Practitioner for Oncology. I work very closely with your oncologist on your treatment plan. I sometimes see you in between your visits with your oncologist to make sure you are doing okay with the treatment.”
Jennifer Porter, NP, ChrIstus st. Vincent Cancer Center … Physical Therapist. I will work with you on exercises and physical activities if you need to gain more muscle strength and movement.”
… Nurse. I’m trained to care for you and talk with you before you see your doctor. I will also take care of you if you are in the hospital at any time. If I’m an Oncology Nurse, I will be in the chemo room and administer your treatments.”
Yvette romero, rN, ChrIstus st. Vincent Cancer Center
…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, or youth group leader.”
… Psychologist/Counselor. I am one who helps you with talk therapy. I do not prescribe medications but we focus on how you are feeling, healthy thoughts, and work on minimizing those thoughts which are not helpful to our well-being. I can facilitate group sessions or individual sessions depending on your preference.”
… Social Worker. I can talk with you and your family about your emotional or physical needs/can direct you to support services and resources.” Caroline Owen, MsW Patient services Coordinator, Cancer Foundation for New Mexico ALWAYS be honest with members of your medical team about your overall feelings. Sources: National Cancer Institute, ChrIStuS St. Vincent, Cancer Foundation for New Mexico, uNM Cancer Center, American Cancer Society C.A.R.E. GUIDE 23
Words from those who care Besides family and friends, the people that those with cancer interact with are their doctors and nurses. These medical professionals often become your friends, mentors, and part of a relationship that you begin to value. Their primary aim is to help you through cancer. Let’s hear from those who directly witness and accompany you through your journey. , RN, Benally
ack ie o, R N , J possible est care M ontañ , b r h ts e g e n u e if th ti n e ro a n ft, Je “Dear P y role is to provid ill support you th From le omero, RN nd ar ew effects a R e e d tt si Our prim your families. W e an d g v Y families managin rt for you and nd lso your o a for you a y with cancer, by t p row u p t b n , su o l u r ne ow yo get a fr spiritua your jou get to kn now! We nal and ly k o n ti to o o t t e o m g n e g . We t you providin d you. d ard time list of people tha an d s an un gh this h t a th to een husb hat is s those aro assist you throu u tw e d b d e a v u lo in w ns of We get to lucky enough, yo n neighbor, xpressio more tha e friendly we’re itional e a d re If n a st s. o e c d ju w n n s. n t e u ie e a ri v l, nc fr e o e th fu st ri d ti w e n e u o p v a a n x s e lo ess b reat life. We k ity to make the e st friend e s ’ b n , o n seat to g rivileged to witn rs re e in a p ortun d child We are p rents an ourageous battle nkful for the opp tners, pa c a r a st th p o so m fe , li re wives, e greatest moments and a on lways th medicati almost a experience these otherapy edications or e: r m a e h u c to o l y te ra fortuna e to tell IV and o continuing any m ith both we’d lik e one. is a positiv and messages ay on schedule w r to starting or d o st ri ps to p ti t r n w to ta c r fe o A ur d impo tremely k with yo • 1. It is ex member to spea uestions. . s re te. Ask q a r lifestyle c 2. Alway lements. u o o v y d a to own pp apply are your APPY ! herbal su y resources that ith us t! • You h H n g a fi U : e d O z to n Y li a erience w ti re 3. U attitude MAKES an intimate exp at ever y day e ntly be su T v ta A ti r si H o o p p W h w th Most im to keep a FRAID TO DO ls who share suc rall, kno ll. • Tr y A uld. Ove idua o c iv e d ls • Live we e…DON ’T BE in e g e stron no on els rave and in a way grateful. Above all redibly b s into your lives c us in s p re e e a om, k u let u You all ways. Yo chemotherapy ro y n a m in so in the with you working people , eve that Sincerely g y Nurses r, we beli of friends te r n e te C n lo e r o e C c ork l Canc Your On Vincent Cancer r care port netw Regiona St. good sup our family cance a Vincent a . y T b S S d Christus e U y d T n d e is u IS n m a R ro o r u H h “At C , an d ey’re su offer yo e heart is r when th ud to be able to th e tt re e e b h t e w g pro e is ily. We’re ause hom and fam ome. Bec l.” h to se clo h ea ser vices an truly ere you c place wh rt, MD rbe g y Scott He al Oncolo of Medic r to c e ir D
WHAT IF YOU COULDN’T AFFORD TO GET TO YOUR CANCER TREATMENTS?
The costs of a cancer diagnosis are more than just medical. For countless northern New Mexicans, the costs of getting to treatment 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. We also offer support groups to all patients and caregivers to help them through this journey. No patient who qualifies for our help is turned away. To apply for help or to donate, visit www.cffnm.org or call 505-955-7931, ext. 3
TOGETHER, WE CAN HELP SAVE LIVES C.A.R.E. GUIDE
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Living with cancer
“I have cancer.” You might never become comfortable with uttering those three words, and you don’t have to. The key is to try to understand the cards you’ve been dealt, and make the best of them. How you do this is different for everyone.
Dealing with emotions Every emotion is a normal one. Denial, anger, fear, stress and anxiety, depression, sadness, guilt and loneliness are all normal feelings. So are feelings of hope, gratitude and optimism. All of these feelings can come and go, sometimes all in one day.
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Allow yourself to feel the spectrum of emotions that naturally come with the condition. Remember there is NO right or wrong way to feel or behave. Don’t judge yourself for your feelings.
Be true to your feelings Some people pretend to be cheerful when they aren’t. Some people want to show the world they can handle cancer on their own, but this might keep them from getting needed help. 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. If you just want to vent and not receive advice, be clear. If you’re looking for specific help, be clear about that too. 26
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Live one day at a time with patience and love for the people that are closest to you. Take the good that each day provides.” — SANTA FEAN LIVING WITH CANCER
Sometimes emailing or texting about your feelings is easier than talking face to face.
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Living with a “new normal” Cancer treatment can be tiring and is almost always stressful, which may mean: • Altered routines • Changed roles and duties in your family • Strained or strengthened relationships • Challenges in dealing with money and insurance • Living with someone else for a while • Needing help with chores and errands
In the midst of this new normal, there are ways to reduce stress, and many of them offer the chance to spend quality time with those you care about or do some of the personal things you’ve always wanted to do: LISTENING TO MUSIC Reading books and magazines that interest you Taking up a creative outlet, such as crafts or music STARTING A NEW PHYSICAL ACTIVITY Watching fun or uplifting videos and movies online, or catching up on sports Writing your thoughts in a journal PRAYING OR MEDITATING Reconnecting or catching up with old friends
Basics • Find the best medical team for you. Ask for referrals and choose those who can help you the most. • Ask questions, seek information and take your time with big decisions. • Consider joining a support group. • Take good care of your body, and be open to something new. • Treat yourself well. • Celebrate triumphs, no matter how small they may seem. Find any excuse to reward yourself with anything that will make your life better. SOURCES: National Cancer Institute
“
I look at my journey as a gift: It made me slow down and realize the important things in life and taught me to not sweat the small stuff.” — OLIVIA NEW TON-JOHN, SINGER/AC TRESS, BREAST CANCER SURVIVOR
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Treatment related side effects A. Loss of Hair
B. Chemo Brain
C. Insomnia
F. Mouth Sores/Dry Mouth
E. Nausea & Vomiting
D. Decreased Muscles/ Motor Skills
I. Skin in Need of Soothing H. Digestive Distress
G. Loss of Appetite
J. Neuropathy (Numb Hands/Feet) K. Sexual Dysfunction
M. Effect on the Bones N. Edema (Swollen Feet and Hands)
O. Anxiety & Depression
Kn G o o d to
ow
to sponds ryone re Not eve the same. Side nt treatme ill vary. w ts c e ff nges e ther cha ve any o a h u m o e y If ’t se that don or signs normal:
AIT. DON’T W
r Call you . y a w a
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L. Infertility
“ P. Overall Fatigue
When our hair falls out, when we lose our appetite, our energy, our willingness to get out of bed, we need to recognize and appreciate that the treatment is doing what it is supposed to be doing. While it is a constant challenge to be grateful for something that makes you feel as bad as treatment does, chemotheraphy does make a difference. It is better than the alternative, and we must constantly remind ourselves of that.” – Jesse Allen, former psychotherapist and co-author of KISS THE GIRLS AND SAY GOODBYE: Getting Through Breast Cancer as a Couple.
Christus st. Vincent Patients: Report serious symptoms to: Mon-Fri, 8am-5pm Nurse triage 505-913-8919 Evenings and Weekends Doctor on call 505-913-8900
CALL 9-1-1 iF YOu hAVE: • Chest Pain or pressure • Seizure • You can’t talk and breathe at the same time • Large amount of blood in vomit, or stool • Fainting or loss of consciousness
SOURCES: Cancer Services of NM/Hermatology Oncology Associates, CHRiStUS St. Vincent, National Cancer institute, American Cancer Society, simplehealth.com
There are always two sides to a coin, good and bad to every situation, and where there is a left, there is a right. With that, when it comes to treatment for cancer, it too, has a multi-faceted quality. Although its intent is to ultimately help relieve you of cancer, in some form, in order to feel better, it may also give you some not-so-good feelings throughout that process. These are known as side effects. Side effects can be a result of: • Cancer • Surgery • Chemotherapy • Radiation • Other medication
radiation side effects: Radiation treatments are much like x-rays and are not painful. The most common side effects are skin irritation and fatigue.
Chemo side effects: Since chemo can damage the blood-making cells in the bone marrow, patients may have low blood cell counts. This can lead to: • Higher risk of infection (from a shortage of white blood cells) • Bleeding or bruising after minor cuts or injuries (from a shortage of blood platelets) • Anemia (from low red blood cell counts), which can cause tiredness, shortness of breath, pale skin, and other symptoms
AVOID INFECTION BY:
• W ashing your hands often: before you cook/eat, after restroom use, being in a public place. • Brushing your teeth 2x a day with a very soft toothbrush • Keeping area around catheter clean and dry (if applicable) • Staying away from those who are sick • Washing raw fruits and vegetables very well • Cooking meat well • Staying away from those with recent vaccines • Avoiding pet related clean ups • Trying to avoid cuts • Not squeezing pimples • Cleaning yourself thoroughly after restroom use
iF YOu hAVE: A. B. C. D. E. F. G. h. i. J. K. L. M. N. O. P.
CALL DOCtOr/NursE riGht AWAY iF YOu hAVE:
• Fever that is 100.5 F (38 C) or higher • Chills & flu-like symptoms • Cough or sore throat • Ear pain or drainage from eye/ ears • Headache or bad sinus pain • Skin rash/ Unusual bruising or bleeding • Sores or white coating in the mouth/on tongue • Swelling or redness anywhere • Bloody/cloudy urine • Pain/burning during urination
trY this: Wigs, hats, scarves, beanies, maintaining a short style haircut. ~See Combat Fatigue & Chemo Brain on pgs 30 and 31~ Avoid caffeine, alcohol, and tobacco. Exercise, start a bed time routine (reading from a book), and set daytime sleep restrictions. Exercise the body and the mind (mind strengthening activities). A bland diet, small frequent meals, Compazine pills, Ativan—or ask doctor for Zofran/Emend. Rinse mouth frequently (1 cup water, 1tsp 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 2-4x a day. Control other side effects that contribute to poor eating. Eat small frequent meals, drink water, and get creative with your diet. ~See Nutrition During Treatment on pgs 34 and 35~ Drink water. Avoid dehydration, caffeine, alcohol fatty/acidic foods. Eat more fiber, take antidiarrheal/laxative medicines (Immodium Ad or Senekot S, depending on distress). Use mild unscented soaps, avoid sun exposure, and keep skin moisturized. Avoid contact with hot water/direct, and unnecessary friction. Use gentle moisturizers, elevate hands/feet, and apply cool compresses. Talk with doctor about safe medications to help increase sexual desire. Talk with doctor to learn options. Drink calcium, slight exercise, ask doctor for medications. Reduce salt. Wear compression devices, diuretics, exercise, and elevate affected area. Try to recognize fear and specific cause, talk with your doctor, and practice relaxation. ~See Combat Fatigue & Chemo Brain on pgs 30 and 31~
St Vincent Hospital Foundation offers free foot massages during treatment.
Dealing with fatigue and “chemo brain” Fatigue is one of the most common and distressing side effects of cancer and its treatment, and the so-called “chemo brain” is part of the fatigue. It’s a short-term effect and 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. Common signs include: • Short-term memory lapse • Trouble concentrating or focusing • Short attention span • Trouble remembering certain words or names, and trouble finishing sentences. • Trouble multi-tasking, like answering the phone while cooking • Slower thinking and processing • Both overall tiredness and chemo brain can change throughout treatment, with good days alternating with bad days. This is normal and expected.
For MORE energy and LESS chemo brain: • Write things down. • Let others help you. Prioritize your to do list. Reduce work time if you have to. • Exercise your brain, do word puzzles, learn something new. • Get 15-30 minutes of light exercise each day. • Get plenty of rest, including at least 8 hours a night, plus naps. • Drink 8 cups of water each day and have 5 or 6 small meals or snacks. • Eat lots of fresh fruits, vegetables and healthy protein and limit processed food. • Give yourself permission to focus on one thing at a time. • Consider relaxation techniques such as meditation. 30
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What to expect in the chemo treatment room • Ask your doctor how long it will take, as it varies quite a bit. You can ask a friend to visit or stay with you the entire time. • The room will have friendly volunteers offering you and your family snacks, warm blankets and pillows. • You’ll be resting in a reclining chair while you receive treatment. • You’ll also be able to experience music and pet therapy with specially trained service dogs, or you can sleep, read, play games, write, use your laptop or do quiet activities that help you relax.
Ideas on what to take on trips to chemo reading material | phone/tablet | headphones | laptop notes/cards to write to people | games to play with family/friends (chess, checkers, cards) | your favorite blanket | notebook & pen to write down thoughts to relay to your medical team | anything that will either help you feel productive or relaxed during that time
Managing and treating pain • 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. • Discuss with your doctor, nurse or pharmacist about how to take pain medicines safely and about any concerns you have about side effects and the possibilities of becoming dependent on pain medication. • It’s easier to control pain right when it starts rather than waiting until it becomes severe. There’s no need to “tough it out.”
G o o d to
K n ow
t. ISTUS S Th e C H R enter C r e c Ca n Vincent i-Fi for s free W provide their nts and all patie . families
If you have an iPhone/iPad, download the “Pill Monitor” app to help get reminders of when to take medication. Keep track of your pain, using the commonly used “pain scale” of 1-10. This is what most 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, (not much at all) to 10 (extreme pain).
Sources: CHRISTUS St. Vincent Cancer Center Oncology Nurses, American Cancer Society, National Cancer Institute, www.cancer.org C.A.R.E. GUIDE
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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 (CDSMP)
Dates: Wednesdays, May 6th – June 17th (Skipping May 20th) Time: 9:00 – 11:30 am Location: Santa Fe Business Incubator, Conference Room B Address: 3900 Paseo del Sol, Santa Fe, 87507 Sign up today! Call Christopher Lucero with the New Mexico Department of Health at (505) 222-8605 or Christopher.Lucero@state.nm.us for more information. 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 also welcome to attend. Topics to include: Feedback, problem solving, communication skills, and goal setting Making an action plan Pain and fatigue management and getting help The mind-body connection Cancer and changes to your body Regaining fitness during and after cancer treatment; endurance exercise Living with uncertainty Relaxation techniques and getting a good night’s sleep Healthy eating and weight management Cancer and relationships Medication usage Making informed decisions about treatment and complementary therapies and planning your future medical care Working with your healthcare team
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My tracking sheet There are a lot of names, dates and details to remember when you’re navigating cancer treatment. Use this Tracking Sheet to keep the most important facts in one place and keep the Tracking Sheet in a handy place so you can refer to it when needed. My Primary Doctor’s name is
Phone:
My Oncologist’s name is Phone: My Nurse Practitioner’s name is
Phone:
The names of the nurses in the Chemo Room are I’m taking these medications Medication name How many mg? WHEN I NEED TO…
How many times a day?
Schedule or re-schedule treatment, I’ll call Talk to a professional about side effects such as fever, I’ll call Check on a prescription, I’ll call List of the scans I’ve had Name of Scan (PET, CAT, BONE, etc)
Date(s)
I’ve had chemo treatments on these dates Dates
Other names, dates or details I need to remember include
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Eating through it all Before, during and after treatment 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 effects.
Water is necessary for every cell in your body. Drink between meals and aim for at least 8 glasses of fluid in water, fresh fruit or vegetable juice, soups and herbal teas each day.
Fresh fruits are carbs and should be included in meal planning. 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.
Dairy can include low-fat milk and cheese. Vegetables are carbs and should fill half your plate. Protein such as dairy, fish, poultry, lean red meat, eggs, peas and lentils helps heal tissues and fight infection.
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.
Don’t be too hard on yourself if the side effects of treatment make it hard to eat. Experiment with your foods and talk it over with your medical team. To keep your energy on an even keel, eat every few hours and don’t wait until you feel hungry. A short walk after you eat will help your digestion and give you more energy. Use smaller plates to eat your meals from. A large plate, full of food, may seem overwhelming, especially if you are tired. Eat with plastic utensils if treatment has left a foreign/metallic taste in your mouth. 34
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Select Whole Grains for good health.
G o o d to
K n ow
certain uld avoid You sho use they ca foods be estion use indig often ca urn, such as: rtb or and hea ks, greasy t ted drin a lo h it w carbona s d ds, foo spicy foo d fat, and even an of sugar gum. chewing
What’s on the menu?
Create a realistic yet nutritious daily meal plan for yourself like this: BREAKFAST SNACK LUNCH SNACK DINNER
Low fat yogurt, or cereal with fat free milk, or whip cream on a waffle Cup of pudding, some gelatin, or a piece of fresh fruit Egg salad sandwich, macaroni and cheese, or a hearty soup Small bag of trail mix, muffin, crackers, piece of bread with peanut butter Baked fish, lean red meat, baked potato with butter, peas or a casserole, or stew
“
During cancer treatment, you may not always feel your best. Wholesome nutrition is key for nourishing your body, keeping up your strength, and for a quicker recovery. Choose foods that make you feel good, and that you are going to enjoy. In the end, you recover stronger and will be more nourished.” Elizabeth Jaramillo-Lopez, RD, LD Outpatient Clinical Dietitian ChRistus st. Vincent
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. If your immune system (white blood cell count) is down be extra careful about cooking food thoroughly and making sure the kitchen is sanitary. Don’t be afraid to try new foods or foods you rarely eat. Cancer treatments affect your sense of taste. Although small weight changes are normal, do your best to stay at a healthy weight and keep physically active. Have a sweet tooth? Add jelly and honey to breads and crackers, jam on fruit, or ice cream as a topping on cakes. 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. Try not to mistake the joy of eating with nourishment. Make sure you are eating delicious, balanced meals, with just the occasional indulgent treat. FoR DRy MoUTH • Brush your teeth after each meal/bedtime • Rinse your mouth (don’t swallow) with salt an baking soda 4-6x a day (½ ts salt, ½ tsp baking soda, cup of warm water) • Use a cool mist humidifier to moisten room air • Moisten foods with broth, sauces, butter, dressings and avoid dry foods • Suck on ice, popsicles, or lemon drops
MANAgINg 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.) • Taking caution with milk products • Keeping your mouth clean by rinsing with baking soda mix
Resources: The American Cancer Society Complete Guide to Nutrition for Cancer Survivors: Eating Well, Staying Well During and After Cancer. Call 1.800-227-2345. Go to www.eatright.org for more information or www.cancer.org for sample recipes to try during treatment. SOURCES: American Cancer Society, www.heart.org, www.cancer.org, ChRiStUS St. Vincent Cancer Center, cancer.net, National Cancer institute.
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C.A.R.E. GUIDE
Get support Cancer support groups are meetings for anyone touched by cancer and they are a good place to talk with others in similar situations. They 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 they 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.
You’re invited ! IN SANTA FE
Cancer Foundation for New Mexico
Where: Cancer Foundation offices, 3005 S. St. Francis Dr., Suite 3B, Santa Fe 87505 Experienced, licensed facilitators lead all support groups. Questions? Contact Caroline Owen, 505-955-7931 ext. 3, caroline@cffnm.org
CanSurvive For those with a new cancer diagnosis, in treatment or recovering from treatment Every Tuesday, 1-2:30 p.m. What to expect: Hear information and receive support on the medical side effects of treatment and the psychological impact of cancer.
Together For family and friends of cancer patients Every Tuesday, 11 a.m.-12:15 p.m. What to expect: Discussion about the unique needs of the caregiver and those close to the cancer patient. This group provides an opportunity to share experiences, feelings and knowledge and perhaps discover ways to heal and find hope in a non-judgmental, compassionate setting.
Living with Cancer For patients with recurrent or metastatic cancer Every Wednesday, 1:15 p.m.-2:30 p.m. What to expect: This group addresses the concept of living well with a chronic illness as well as the associated grief, loss and fears. It’s an opportunity to share emotional and practical concerns in a confidential and empathic environment.
Empowering Ourselves to Heal For women with breast and reproductive cancer Second Saturday of every month, 10 a.m.-12:30 p.m. What to expect: This is a workshop that includes short meditations, sharing and creative expression exercises such as writing and collage.
Pink Ribbon Advocacy Club For women with breast cancer Every Monday 1-1:45 p.m., feel free to bring your lunch. Where: Cathedral Basilica of St. Francis of Assisi, Clare Hall, 131 Cathedral Place, Santa Fe 87501 Questions? Contact group leader Dr. Ana Martinez, 202-474-9141, anaparismd@gmail.com What to expect: Discussion and exchange ideas about experiences of breast cancer. C.A.R.E. GUIDE
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Leukemia & Lymphoma Society Blood Cancer Support Group For anyone with leukemia or lymphoma Second and fourth Tuesdays of the month, 2-3:30 p.m. What to expect: Learn and share experiences, exchange helpful tips and discuss communication with family and medical team members. For location and questions, contact Eileen, 505-428-0670, ej@eileenjoyce.com
Surviving Sisters Group For women living with or surviving cancer Second and fourth Tuesdays of every month What to expect: Share stories, offer encouragement, share lessons about dealing with a cancer diagnosis. Contact Elizabeth 505-231-3481 for more details
Santa Maria De La Paz Cancer Support Group Every Tuesday 1-2 pm Contact Sister Colleen: 505-473-4200 IN ALBUQUERQUE
Survivors Writing Together Where: UNM Cancer Center, Room 1048, 1st floor What to expect: A journaling support group for individuals who have a current and/or past cancer diagnosis. 2:30-4:00 p.m. For more information call 505-925-0104
UNM Cancer Education & Support Group
Where: Central United Methodist Church, 201 University Blvd. NE, Room 307, 2nd Floor Second and fourth Mondays of the month, 5:30-7 p.m. What to expect: A brief educational session followed by time for sharing and support. Open to patients, survivors and loved ones. This support group is offered in partnership with People Living Through Cancer. For more information call 505- 925-0104 STATEWIDE
Cancer Support Helpline Volunteers with a personal experience of cancer provide one-on-one peer support seven days a week. Call 505-255-0405 or 855-955-3500
Los Alamos Council on Cancer LACC sponsors 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: Paula at 505-570-0906 for up-to-date meeting times and information.
The first meeting/event is always the hardest one to attend. Remember, if you don’t know what to say, you can attend support groups and just listen if you’d like.
SOURCES: National Cancer Institute, Cancer Services of NM, Cancer Foundation for New Mexico, Leukemia & Lymphoma Society, UNM Cancer Center See www.cancersupportnow.org for more programs and organizations. 38
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Get connected Support groups aren’t the only way to connect with others regarding your cancer experience. All you need is an Internet connection and a laptop, personal computer, tablet or smart phone. If you don’t have electronics, almost all local libraries offer free computer time. Check out these networks to engage with others and gain tools for yourself! Online Support Communities American Cancer Society, www. Cancer.org From the home page ->Programs and Services at the bottom of the page, then click on Online Support Communities. WhatNext: Cancer patients, survivors and caregivers can gain firsthand insight into living with cancer and connect with others facing a similar diagnosis. Cancer Survivors Network: Connect with others through a member search, discussion boards, chat rooms and private e-mail. Also, you can create a personal space to share a bio, photos, audio and online journal. Circle Of Sharing: Create a Personal Health Record to help get the information you need about your diagnosis, find resources and share important information with family and friends. I Can Cope Online: Quickly learn important facts and practical tips about cancer and related issues. Support Email Series Subscribe to a series of emails – written for patients, survivors, and caregivers. Sign up at http://www.cancer.org/aboutus/howwehelpyou/emailsignup/email-sign-up FREE Seminars: Go to www.LosAlamosCouncilOnCancer.org to watch seminars on numerous cancers.
Cancer Support Community www.cancersuportcommunity.org Online support group led by professionals, offering information on stress management Caring Bridge www.caringbridge.org/ Free personal websites to stay connected to family and friends during illness. Post and receive pictures and messages privately online. Facebook pages to “like” Cancer Support Now • Livestrong • Cancer Support Community Navigate Cancer Foundation • CancerKicker.org Cancer Services of New Mexico • American Cancer Society Cancer Foundation for New Mexico Free Videos Youtube.com Cancer Survivor Channel (EXAMPLES: “2014 ESPYs Stuart Scott” “flashmob of cancer survivors”) Pinterest.com Cancer Inspirational Videos or Quotes Post breast cancer exercises www.exerciseafterbreastcancer.com Songs to purchase/download CANCER AWARENESS RESOURCE & EDUCATION GUIDE RENESS RESOURCE & EDUCATION GUIDE www.apple.com/itunes/music When Pink Is Just A Color Again • Stand up to Cancer I Run for Life — Melissa Etheridge Free educational books online National Cancer Institute: www.cancer.gov/publications More resources www.Cancer.net • www.caregiving.org • www.caregiveraction.org www.cancercare.org • www.breastwishesfund.org www.stvin.org/myhealth myHealth – Manage your Health 24/7 For CHRIStuS St. Vincent patients only
C.A.R.E. C.A.R.E.
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Download apps for iPhone or iPad at www.applestore.com Health apps Med Coach Prime: Caregiving Simplified Download Skype for free video chatting with loved ones at www.skype.com Google / download “free meditations” online.
General resources 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 non-profits can help. Financial Assistance Cancer Foundation for New Mexico If you live in the counties of Santa Fe, Rio Arriba, Taos, Los Alamos, Colfax, Mora, San Miguel, Union or Harding you may be eligible for assistance from the Foundation in these categories: • Mileage Patients who travel 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 stays Rooms at Santa Fe Suites are provided to patients receiving treatment on consecutive days and for those living at least an hour away from the treatment center.
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xico r New Me dation fo n u ose o F th r r e Canc snacks fo utritious n ilies, s e m id fa v d pro tment an a e tr g in nter. undergo ancer Ce RISTUS C Spanisha r in the CH fo e n arrang a c o r to ls a y The r/translato interprete g ents. in k tm a a e e sp ms and tr a x e g n ri help du 3 931, ext. 505-955-7
• Patient Emergency Fund This may be used for such things as repairs to a car needed for travel to appointments . To learn more about CFFNM or to donate, visit: www.cffnm.org 505-955-7931, ext. 3 3005 S. St. Francis Dr., Ste. 3-B, Santa Fe
Help paying for medications The St. Vincent Hospital Foundation will pay pharmacy costs of up to $1,500 per year for qualifying patients of the CHRISTUS Cancer Center. Speak with your health care provider for more information. More free and reduced-cost resources Cancer Services of New Mexico Free Family Cancer Retreats April 17-19, September 11-13 Educational sessions on treatments, clinical trials, talking to kids about cancer, pain management, insurance and finances. Albuquerque Marriott Pyramid North 5151 San Francisco Rd. NE, Albuquerque mike@cancerservicesnm.org 505-239-4239
More free and reduced-cost resources 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 NM’s Stephanie Michnovicz at 505-999-9764
American Cancer Society Resource Centers and Programs Volunteers help with programs and services and make referrals to community resources. Santa Fe CHRISTUS St. Vincent Regional Cancer Center 490 W. Zia Rd. 505-913-8900 http://www.stvin.org/cancer-center-services
Albuquerque The Cancer Center at Presbyterian Kaseman Hospital 8300 Constitution Ave. NE 505-559-6100 www.phs.org
Patient Navigators Professionals work with newly diagnosed cancer patients, their families and caregivers, providing help with cancer information, community-based resources, transportation, lodging, nutritional information and free wigs. In Santa Fe and Albuquerque, contact Jessica Quiring, 505-262-6018.
Food Assistance Kitchen Angels For residents of Espanola, Los Alamos, Pojoaque and Santa Fe 505-471-7780, www.kitchenangels.org Meals on Wheels For residents of Santa Fe County 505-992-3094 Food Stamps For all New Mexico residents
https://www.yes.state.nm.us/
Road to Recovery program Volunteer drivers provide transportation to and from treatment for cancer patients who do not have a ride or are unable to drive themselves. Volunteer drivers are needed in Santa Fe. Contact Geraldine, 505-262-6028. Reach to Recovery program Breast cancer survivors provide one-onone support and information to help newly diagnosed patients cope with breast cancer. Contact LeAnne, 505-412-1817 Hotel stays The American Cancer Society partners with hotels and motels to provide free or reduced cost lodging to patients traveling more than 50 miles to their cancer related appointments. 800-227-2345 to enroll.
Transportation Santa Fe Ride Program
www.santafenm.gov/santa_fe_ride SOURCES: Cancer Foundation for New Mexico, American Cancer Society, Cancer Services of NM, National Cancer Institute, CHRISTUS St. Vincent Holistic Health, & Wellness, St. Vincent Hospital Foundation
EVERY JOURNEY NE KISS THE GIRLS AND SAY GOODBYE was written to provide a guide for people navigating cancer treatment and its aftermath. It is not only for the patients and their partners, but for the families and friends who are all a part of this process; who want to know what to expect, what is helpful and what is not helpful while supporting one another through this devastating experience. • Keynote speakers 2014 Susan B. Komen “Lunch for the Cure” • Available for speaking engagements, workshops and retreats • Kiss the Girls and Say Goodbye available on Amazon • NOW Available at
EEDS A ROAD MAP
AMAZON REVIEWS FROM READERS: ~ “Fearless, painfully honest, gut-wrenching writing and yet laced with boundless humor and sharp intelligence. An invaluable document for any couple faced with these daunting circumstances.” – PT ~ “This is a must read for any couples who are faced with this shocking news.” – MW ~ “I found myself taking the book with me from one room to another as I literally could not put it down.” – BE ~ “Simply said, I couldn’t put it down. Pain, despair, laughter, love, appreciation. It’s all there and so much more.” – CC ~ “Jesse and MacKenzie Allen have created a raw, revealing portrait of how they faced and lived through Jesse’s breast cancer diagnosis and treatment. The book is real, heart-rending, and funny and will help newly diagnosed and their caregivers immeasurably in their fight against cancer.” – Jacquelyn Ostrom, Executive Director, Carol Milgard Breast Cancer
“I love my life. I’ll fight for it.” — MICHAEL KIERST
Surviving and thriving The words, “I’m a survivor” make a strong statement, and they mean different things to different people. Survivors can be those who have completed treatment, who are currently cancer-free or who have been diagnosed with cancer and are working through it. The most important aspect of surviving is doing your best to thrive regardless of where you are in the journey.
Creating your personal Survivorship Care Plan The Institute of Medicine suggests working with your medical team to create a personal care plan once you’ve completed cancer treatment. The plan should summarize such things as: • Potential late side effects, their symptoms and treatment • Recommendations for regular cancer screening and follow-up care • Common psychological and social effects • Financial issues • Recommendations for a healthy lifestyle • Genetic counseling • Effective prevention options • A list of support resources
You can start developing this personal Survivorship Care Plan with the guidelines at www.livestrongcareplan.org 44
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A pancreatic cancer diagnosis, Valentine’s Day, 2014, was unwelcome news after feeling sick for a few days. Those days had been spent skiing at Taos Ski Valley. Early diagnosis proved to make the difference in my journey. Health professionals (at CHRISTUS St. Vincent) in New Mexico saved my life. Treatment included surgery and 6 months of treatment. By hanging tough, taking one day at a time and trusting doctors and caregivers, it is possible to get through to a better day. There were many trips to Santa Fe from Taos, where the CFFNM’s emotional and financial support was helpful. A year later, I am cancer free. My future includes many more tests and monitoring. Life is good and not to be taken for granted. I am prepared to do whatever it takes to continue to live. The gift of life is the most beautiful gift of all. Recently, I am back on my mountain bike. Every pedal stroke makes me more confident that I can make it to the top of the mountain one day. Being diagnosed with cancer and knowing I am fighting my way back to a normal life, makes getting to the mountain top so much more gratifying.” — MICHAEL KIERST, CANCER SURVIVOR
Resources for life after cancer Cancer Services of New Mexico Central United Methodist Church, 201 University Blvd. NE, Albuquerque, 87106 Fourth Annual Long-Term Effects of Cancer Survivorship Conference Breakout sessions on Fatigue/Sleep Issues, Lymphedema, Creative Movement/Visual Art Interactive, End of Life Planning and Support March 28, 8:30 a.m.-4:30 p.m. Contact Patricia Torn, 505-307-3414, ptorn@comcast.com Cancer Support Now Helpline 505-255-0405 or 855-955-3500 American Cancer Society 800-227-2345
If cancer comes back (recurrent cancers) • You are always entitled to get a second opinion • You may participate in a clinical trial • Your doctor might call for more treatment, repeating the same treatments you had before or calling for new treatments • Coping with recurrent cancer
It is natural to feel fearful, angry or hopeless if your cancer comes back. Talk to your loved ones about your feelings, talk to your medical team about options and focus on thriving: • Make conscious choices about how you spend your time and whom you spend it with. • Create more special time with ones love. • Take classes in things you’ve always wanted to. • Start an organization, or create the tools to make a meaningful career change if you want. • Document your experience and lessons using writing, art, photos or any creative outlet. SOURCES: American Cancer Society, Gloria Media & Supportive Care Team at the Presbyterian Cancer Network, Lance Armstrong Foundation, A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies, www.livestrongcareplan.org, Cancer Services of NM, Jesse and MacKenzie Allen C.A.R.E. GUIDE
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Other types of “therapy” & feeding the soul Much of your life living with cancer is focusing on going to appointments, taking the medicine that has been prescribed, and undergoing treatments. This is crucial in feeling better. However, medication and treatment are not the ONLY ways to feel good! There are many local programs that can help you through the physical, mental and emotional stress of the standard medical treatments throughout your cancer journey. Santa Fe ChriStuS St. Vincent’s holistic health & Wellness program Yoga for Cancer Patients Every Monday 2 – 3:00pm It will help: • Improve flexibility, strength, circulation, balance, stamina, and aims to reduce muscle soreness and fatigue. Only $5 per class!
Yoga for Cancer Survivors Every Thursday 5:30pm – 6:30pm The class focuses on yogic breathing, postures, and meditation. Only $5 per class! It will help: • Minimize side effects of treatment • Reverse postural and range of motion issues from surgery and reconstruction • In awareness and prevention of lymphedema (swelling and fluid build up) • Rejuvenate the body with breath and movement
Taught by Cancer Exercise Specialists Lisa Gulotta and Cynthia Nero Reserve your spot by calling 505-913-3820 Meditation and Mindfulness Class – FrEE! Every Wednesday 5:15pm-6:15pm Take some time to give yourself the gift of peace and quiet! All classes above take place at 490 B West Zia , Suite 4 Santa Fe, NM (by the ChRiSTuS St. Vincent Cancer Center) 46
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What is Complementary Medicine? Complementary medicine is used along with standard medical care. People use Complementary therapies for a variety of reasons including: • To help cope with side effects of treatment • To ease worries and stress of cancer • To try to treat or cure their cancer
Complementary types of therapies include: Acupuncture | Antioxidants | Aromatherapy Art therapy | Chiropractic | Cognitive-behavioral therapy Dietary Supplements | Exercise | Herbs and extracts Hypnosis | Intercessory prayer | Intravenous Vitamin C Meditation | Multivitamin | Music Therapy Pet Therapy | Relaxation Therapy | Yoga Spiritual Healing | T’ai chi | Tea | Therapeutic Massage
Whenever starting a new routine, exercise program, or using complementary medicine ALWAYS consult your doctor first.
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The St. Vincent Hospital Foundation provides acupuncture and herbal treatment for qualifying patients. *Acupuncture Therapy • Doctors of Oriental Medicine certified in oncology *Massage Therapy • Therapists certified in oncology *Offered at a reduced rate For more information contact Amber Reynolds-Chenault, DOM 505-913-3821 Albuquerque Relaxation and Meditation Group Every Tuesday 10:30am-10:50am UNM Cancer Center Meditation Room, 3rd Floor This group offers an opportunity to learn and practice meditation, relaxation and guided imagery; open to everyone.
Check with your insurance company to see if any complementary therapies are covered!
Cancer automatically puts people in an area of your life that you are unfamiliar with. It might be hard to initially step outside of the box and do something you never have. That is natural, however, 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, then allow yourself to try something new!
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Move out of your comfort zone. You can only grow if you are willing to feel awkward and uncomfortable when you try something new.” – BrIan TraCy SOURCES: ChRiStUS St. Vincent, National Cancer institute, holistic health and Wellness Center, UNM Cancer Center, St. Vincent hospital Foundation
Reduce Unwanted Side Effects from Chemotherapy, Surgery and Radiation with Acupuncture and Oriental Medicine. • Fatigue • Nausea and Loss of Appetite • Post Surgical Pain • Hot flashes and Night Sweats • • Joint Pain & Neuropathy • Improve Resilience and Longevity • Alaina Speraw, Doctor of Oriental Medicine, Expert in Cancer Support therapy with 25 years experience, formerly of the Virginia G Piper Cancer Center, Scottsdale, AZ, is now offering compassionate care in Santa Fe, NM at:
Goldlake acupuncture & oriental Medicine 1476 S. St. Francis Drive, Santa Fe, 87505 www.goldlakeacupuncture.com
Call today 480-710-8458 for appointments Gentle, effective Acupuncture, Chinese Herbs, Oriental Nutrition, Sound Healing, Chi Gong Energy Exercises and Meditation. 48
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Mention this AD for 20% off first visit.
Childhood cancer When a child or teen is diagnosed with cancer, parents and other adults involved in the child’s daily life are often the keys to how the family copes with the diagnosis. How these adults handle their emotions depends on their own life experiences, cultural differences, and their personal coping styles when faced with major stress. Realize that you may never know what caused the child’s cancer. Learn as much as you can and move forward by focusing on their future.
For adults Changes to Expect • Needing to take time off from work • Signing treatment consent forms and making important decisions • Needing help to care for other children in the family • Adjusting school schedules and communicating with teachers to ensure a healthy return to the classroom • Feeling shock, disbelief, fear, guilt, sadness, anxiety and anger For ChildrEn dealing with the diagnosis • Infants, toddlers, children and teens will each respond differently to their cancer diagnosis. Be attentive to their reactions and seek advice from the cancer care team about finding extra support. For all Family mEmbErs dealing with the diagnosis • Seek comfort from other family members and friends • Ask questions and get answers from the medical team • Learn about the short and the long–term effects of the recommended treatments • Learn 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 • Get help from community sources the american Cancer society is a good source for learning about cancer in children. www.cancer.org or 800-227-2345
For questions about pediatric cancer, call unm hospitals at 505-272-4461
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Source: American Cancer Society C.A.R.E. GUIDE
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“I’m a guy who likes to keep moving. And my treatment keeps me on the right path.” — Carl K. prostate cancer patient
THE OFFICIAL CANCER CENTER OF THE STATE OF NEW MEXICO 50 C.A.R.E. GUIDE
“Knowing when to shift gears makes biking more rewarding— and my cancer treatment at UNM Cancer Center more successful. That’s why I’m still riding today. Learn more about my story at UNMHSLifeStories.org and cancer.unm.edu.” A NATIONAL CANCER INSTITUTE CANCER CENTER C.A.R.E. GUIDE 51
Talking with your child Communicating to family members of your diagnosis is a crucial yet often times difficult part of beginning your cancer journey. Children and Cancer It’s normal for children to see the world only as it relates to them, and it’s common for them to think something they said or did caused the cancer of a loved one. It’s also common for children to resent losing a parent’s attention during treatments, believe that cancer is contagious, and think that cancer is always terminal. 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. Try to keep your family life as Talking to your child about a family normal as possible during this time, member’s cancer: and also let your child know that • Be patient and remember this is some changes may be necessary. a process. Give small amounts of Some adjustments the family can information at a time expect: • Use words appropriate to the child’s • Your child might not get to see you as age and vocabulary much because of your appointments • Allow them to ask any questions they • Children may have to pick up some of want the housework • Ask them if there was anything you said that scared them or didn’t make sense • Listen to their concerns • Let them feel included in the fight against the cancer • Reassure them of your love
Your child may see you crying or upset from time to time. These are good times to let your child know that cancer is a scary disease and that it’s OK to have strong feelings about it. It’s also a good time to reassure your child that the family will work together to handle it.
If you have multiple children, talk to each one individually so that the message and approach may be tailored if necessary. If the parent doesn’t feel comfortable telling the child about the diagnosis, it can be helpful to enlist a close relative or friend for the first conversations.
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How will your child react? Each child will react in different ways and it’s common for children to act less mature when they are upset. Your children can’t always tell you in words, but they will clearly show their feelings in how they act. Activities, such as using puppets or painting, are good ways for young children to express their feelings. Older children might prefer writing or drawing. If your child is showing extreme reactions, talk with your healthcare providers about getting extra help. 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. ReSOuRCeS 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.cancer.gov
Sample Conversation When Dealing with an Aggressive Cancer: When Your Child Asks: “Will you get better?” Parent Answer: “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. “
Family Cancer Resource Bags – Free information kits to help parents discuss the cancer journey with their children. Materials are targeted for children aged 4-12 as well as teenagers. 505-259-9583 Sources: American Cancer Society, National Cancer Institute
Looking your best Cancer treatments and their side effects almost always cause physical changes. Sometimes people say they can’t recognize themselves in the mirror. Still, there are many ways to both look and feel better by taking positive steps to cope with this new physical appearance. Reconstructive surgery This is a realistic option for many people who undergo surgery to treat cancer. Talk with your health care providers to understand your options and find out what types of reconstructive surgery are covered by your insurance. Prosthetic devices/artificial 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.
ChrISTuS St. Vincent Cancer Center Gift Closet
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 — wig, no wig, hats, scarves or nothing at all. It’s your decision.
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Losing our hair is one of the most difficult aspects of chemotherapy, for women in particular. Even if we aren’t vain, the prospect of being bald is horrifying because so much of our appearance is tied in with how our hair looks. We’d all rather have a bad hair day than a no hair day. It brings home that we actually are cancer patients and that other people can tell we are cancer patients. During treatment it is extremely important to maintain the recognition that we have chosen to do this; we accept all the indignities through it all in order to live longer, love more and do all those things we couldn’t have done if we had not chosen treatment.” — Jesse Allen, former psychotherApist And co-Author of Kiss the Girls and say Goodbye: GettinG throuGh breast CanCer as a Couple
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Wigs, hats and scarves Chemotherapy often causes temporary hair loss. You may want to cover your head to keep warm, to protect your scalp from the sun or just for aesthetic purposes. Choosing a wig, beanie, hat or scarf is a practical step and it can also be very emotional. It’s a good idea to enlist the support and company of a friend when you go shopping. Many are willing to work with you during your treatment. Gift Closets santa fe st. Vincent Hospital foundation Free wigs for women undergoing cancer treatment ChRIStUS St. Vincent Regional Cancer Center 490 W. Zia Rd., Santa Fe 503-913-8900 Albuquerque Free wigs, liners, breast prostheses, mastectomy bras, turbans, hats, headbands and scarves New Mexico Cancer Center foundation Conference room 4901 Lang Ave. NE Wednesdays, 2-5 pm All in partnership with American Cancer Society
Buy a wig before treatment begins so that it can best match your hair color and style!
“We take caring for you seriously and understand how important your look is to you!” – Dolores Dow-ortiz santa Fe Hairtage owner
look Good feel Better In this American Cancer Society program, professional cosmetologists volunteer to help women in cancer treatment learn how to cope with skin changes and hair loss. Women who participate in these free “beauty lessons” also receive a free, personalized selection of quality cosmetics and skin care products donated by the cosmetics industry and valued at $250. santa fe Residence Inn by Marriott, 1698 Galisteo St. Classes are scheduled as needed. Call 800-227-2345 Albuquerque New Mexico Cancer Center foundation Wednesdays, 4-5 pm by appointment Call Alexandria, 505-857-8460 for details los Alamos los Alamos Council on Cancer Register at www.losAlamosCouncilonCancer.org or call LeAnne at 505-412-1817 los Alamos Medical Center Cancer Corner Attend classes and try on and select wigs, hats and scarves. Call Judy at 505-672-9503
SOURCES: American Cancer Society, National Cancer Institute, ChRIStUS St. Vincent and New Mexico Cancer Center Foundation
Let’s go shopping Among “the new normal,” for those living with cancer, is a new shopping list and ways to get everything, from medical supplies to groceries and food. Santa Fe pharmacieS and medical Supply locationS For the home Albertsons • Christus st. Vincent CVS • Del Norte Pharmacy Lovelace Medical Center • Pharmaca Put some of these helpful items on your initial shopp Sav-On Drug • Smith’s • Target ing list! Walgreens • WalMart Thermometer—To check for fevers Latex gloves Medical supplies only Blood pressure monitor Band-Aids Preferred Medical • A&R Medical Supply Neosporin Sanitizing antibacterial wipes Unscented moisturizing lotion Compression socks Sandwich bags—Great for packing snacks Bottles of water Get multiple small frames and print Extra blankets/robe/pillow photos. Having pictures of family and Soft brush tooth brush
Plastic Water bottle(s)—Find a couple ones that the person would like, and can easily fill up. Airborne/Emergen-C-- For caregivers to stay healthy Oxygen detector (Pulse oximeter)—In case of heart/lung complica tions
Tissues and paper towels Blender—for shakes and smoothies Hand Sanitizer—For Caregivers/guests Kleenex A lap tray—for eating, reading, computer work Vaseline Trashbags & bucket—For bedside nausea Extra pillows Winter gloves—Will help keep hands warm with chills Travel neck pillow—Have comfortable car rides Pill organizer and crusher Disposable masks for guests Heating pad/throw for sofa Sunscreen/Hat
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Avoid multiple unnecessary trips to the grocery store by keeping a running grocery list in a prominent place in the house for items to be added to. Large dry erase boards/calendars help to keep track of people’s schedules & appointments.
those people/memories I cherish make a difference. Looking at my children and seeing those happy moments on my bedside help to give me comfort and strength.” – Father oF Four, Santa Fe
Getting a handicap placard You can apply for a Parking Placard for Mobility impaired individuals from the Motor Vehicle Division. Download and print the form, which is MVD10383, from the website at www.mvd.newmexico.gov/forms.aspx or pick it up at the local Motor Vehicle Division office. Your doctor will fill out the application and you will bring it into the Motor Vehicle Division office to get your placard.
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don’t want to leave the house to shop or get meals? With a $6 minimum delivery charge, dashing delivery will take local meals straight to you! participating restaurants are: Santa Fe Bar & Grill | Cowgirl Santa Fe BBQ | Yin Yang | Mu Du Noodles | Thai Café | Counter Culture Café Rooftop Pizzeria | India Palace | Atrisco Café & Bar | Pizzeria A Lino | Izmi Sushi | Pyramid Café Posa’s–El Merendero | La Choza | Lu Lu’s Chinese Cuisine | Jambo Café | Café Café | The Burrito Co. call 505-983-daSh | or visit dashingdelivery.com to review menus and order food online! Kaune’s neighborhood market offers home delivery on Mondays, Wednesdays, and Fridays for a $10 charge www.kaunes.com, Call 505-982-2629 before 11:00am for same day delivery SOURCE: Testomonies of survivors and caregivers.
you matter
SANTA FE PLACE MALL PROUD SUPPORTERS OF C.A.R.E
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Caring for the caregiver Your greatest test is when you are able to bless someone else while you are going through your own storm.” – Regina Malabago
A caregiver can be a spouse, child, relative, good friend or hired help. Regardless of who the caregiver is, caring for someone with cancer means big changes. Caregiving isn’t just about picking up medicine, driving to appointments, reacting to treatment related side effects. Instead, it truly is about doing everything you can to make that person living with cancer have a better daily life. Whether it is physically, emotionally, or mentally, you are “on-call” to adhere to those needs. good to Kn
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“Be sure to take care of yourself” Caregivers hear this many times from others. However, it may be hard to know what that even means. In actuality, “taking care of yourself,” means something different to absolutely every caregiver. Only you know what it means to make yourself fulfilled and at your best. Sometimes you might have to think about if what makes you happy has changed. Do some reflection. Your answer to “when do I feel at my best?” is crucial to “taking care of yourself.”
If you aren’t “healthy” in most, if not all, aspects of your life it will be more difficult to take care of someone else.
– Mackenzie and Jesse Allen
“Side effectS” of being a caregiver those living with cancer are not the only ones affected by the diagnosis. as a caregiver you may find that: • 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 that 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
Be your own caregiver by “Filling your tanks” Imagine that within yourself you have 5 distinct “tanks” with 5 distinct ways to “fill” them. Working for balance in these five areas will help you stay healthy and on track: • Physical — Exercise, get enough sleep and take care of your body • Emotional — Be realistic about feelings and share them with others who are supportive • Mental — Logically and positively approach situations with a calm mind • Spiritual — Maintain a sense of peace by meditating, praying or going to church • 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
10 CAREGIVER REMINDERS: 10) Every situation and person is different. There is not a “one size fits all” approach. Also, let go of “what if” thinking.
“What if I mess up?” No matter what you do, you’ll likely come to a 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. You WILL make mistakes. Not making the same one twice, is the true testament of “success”, here, and in any role.
Recognize signs of depression and emotional stress and do something about it. Seek a support group or speak with a professional. Don’t be afraid to talk about your feelings.
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Empower yourself by going to doctor visits, asking questions and educating yourself about the illness.
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Keep a close network of people who will let you share your feelings and priorities. This could include family members, friends of your choice, and your boss and a few select coworkers, if applicable.
7)
Caregiving is a journey of cycles. Old emotions and issues may return unexpectedly.
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Communicate honestly, clearly and frequently with the person you are caring for. Sharing your feelings can be rewarding for both of you.
5)
Never let the one you are caring for feel like they are a burden. As tough as it is to admit, the situation isn’t entirely about you.
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Find your stress relief, whether it’s exercise, writing, yoga, meditation or hanging out with positive people. Do something for yourself each day.
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Admit when the load is getting heavy. You may not be able to provide all the care by yourself. You may need personal strength from others.
2)
Be kind to the person living with cancer, to those around you who might not understand your role, and especially to yourself.
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Be mindful and accepting of the changing needs as the situation evolves. Stay flexible, and make adjustments as needed.
What to do when you aren’t “needed” anymore: Let it be known that this time will actually never exist. Will the WAY you are “needed” change depending on the health of your loved one? Absolutely. Sometimes you may need to amplify your aid, other times, you may need to water it down. However, they will always need you, in some form, for emotional and/or mental stability and simply to “be there” for them. You are a part of this journey with them, and although your to-do list may have dwindled, their desire to feel your love and attention has not.
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The concept of 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.
Support groups Together: A Group for Family & Friends of Cancer Patients Discussing the unique needs of the caregiver and those close to the cancer patient 3005 S. St Francis Road, Suite 3B Tuesdays, 11 a.m.-12:15 p.m. Retreats Cancer Services of NM Spring Family Cancer Retreat April 17–19 Cancer Services of NM Fall Family Cancer Retreat September 11–13 Caregiver Support Program Free program that matches caregivers with volunteers who have personally been in the same role. info@cancerservicesnm.org • 505-259-9583
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Books Passages in Caregiving by Gail Sheehy When Life Becomes Precious: The Essential Guide by Elise Babcock
Like many people I was thrown literally overnight into the world of being a primary caregiver. I was so lucky to find this free support group and resource in town to help me connect with others who are also dealing with the collateral damage of cancer, which impacts the caregivers greatly, too, in very deep and socially invisible ways.” – Dana SOURCES: Cancer Services of NM Caregiving Program Director, John Trotter; testimonies from caregivers; Ronni Levine, Licensed Marriage and Family Therapist and leader of CFFNM’s TOGETHER support group; Cancer Foundation for NM
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Supporting a friend or loved one People don’t always need advice. Sometimes what they need is a hand to hold, an ear to listen, and a heart to understand them.” – unknown
When it comes to having a friend who is living with cancer/is a caregiver or somehow is 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 are different, it is extremely important to be aware of how your words and actions are perceived. WHEN TRYING TO HELP ONE WITH CANCER OR ONE CLOSELY AFFECTED BY SOMEONE’S DIAGNOSIS • LISTEN! Truly hear what your friend is telling you. Undivided attention is a priceless gift. • Give pulse checks. Stay connected and be consistent. Keep asking how things are going throughout the journey. • Be Responsive. Reply to every call, email and text in a timely manner. • Send random “thinking of you” notes and/or gestures, such as cards. Any outreach can show your love. • When you offer to help, be clear about what you can and will do, such as bringing meals or gift cards or providing 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. • Greeting cards, postcards and humorous emails and texts are easy ways to express your love. • Touch or hug your friend at every appropriate opportunity. • Tell them you love and care about them. Even if they don’t have the energy to respond, your message means a lot. • Schedule visits or times to hang out in advance – and with enough time for them to prep (mentally and physically) for the interaction. • Laugh with them! Humor always brightens a day. • Help your friend focus on good feelings and moments of happiness. • Remember to be there a few months after the diagnosis, when your friend or loved one may need your help even more.
DO:
WHEN TRYING TO HELP ONE WITH CANCER OR ONE CLOSELY AFFECTED BY SOMEONE’S DIAGNOSIS • Withdraw because you’re unsure of what to do or say. • Take more than 24 hours to reply to any outreach. They need to feel that you are responsive and available. • Be offended if your friend declines an offer to hang out. Sometimes the energy just isn’t there. • Offer “alternative” diagnosis or medical advice. • Be overbearing with too many questions if they are unresponsive. • Be afraid to ask questions yet don’t always bring up the cancer constantly unsolicited if it’s evident they don’t want to talk about it. • Say “Everything’s going to be okay/fine”, “everything happens for a reason.” Sometimes overly optimistic reactions give the impression that you don’t understand the pain or severity of the situation. • Wait for your friend to ask for help. Be proactive. • Send “get well soon” messages. Cancer is a long journey. • Say, “I know what you’re going through” if you haven’t experienced this yourself. • Say “yea, I’m tired and busy too” if they vent to you. It’s a different type of fatigue and stress that they feel. One with cancer or their caregiver may feel like you are downplaying their feelings or their situation.
DON’T:
IMPORTANT: Respect your loved one’s privacy. Always ask permission to share news with others, and let your loved one know when you have done so.
Set calendar alerts reminding you to check in with a quick “hello” or offer of help on a regular basis. Say things like, “I don’t know exactly what to say, and can’t imagine what you are going through, but know I’ll be here if you need anything at absolutely ANY time of day.” Then be there at those times if they reach out.
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My friends combined their resources and mailed me an envelope with a gift card, because they knew I had begun to struggle with finances. I also received handwritten cards from people in my life, just to say they were thinking of me. Another friend never fails to respond to a text message with encouraging words, no matter what time of day it is. These gestures have meant the world to me and really do make a difference in my life, therefore that of my loved one as well.” – local caregiver
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RING THEORY How it works: “When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help.” Comfort In, Dump Out.
4 BEST RESPONSES TO A HURTING FRIEND I. Affirm Affirmation lets your friend know you heard and valued every expression. It can be as simple as saying, “Thank you for having the courage to share that with me.” Affirmation after vulnerability is so important– it 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 is the most surprising part?” “What do you feel is hardest for those around you to understand?” III. Validate Let your friend know you empathize. You might say, “I’m so very sorry you’re going through this” or, “Your feelings are totally valid.” IV. Ask how you can help Ask “What’s the best way I can support you right now?”
G o o d to
K n ow
ring up want to “b heir ’t n o d y n Ma eone/t er” of som ey don’t the canc th e because loved on em of it. th ” d emin want to “r is already on the at it don’t Know th hen you /7 and w 4 the 2 ff o s mind e iv times it g e m st so ju sk a ply n you sim impressio . don’t care
Truly being there for someone you care about is often a trial and error process. Keep working at it. They need you, now, more than ever.
Keep your friendship a two-way street. Spend time listening to your friend but also share updates on your own life. Whatever you talked about before the cancer diagnosis will still be appropriate during treatment. It helps with their sense of “normalcy.”
SOURCES: National Cancer Institute, Testimonies from those affected by cancer, www.nmcancercare.org, American Cancer Society, Shasta Nelson, author 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, MD, Cancer. org
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Home health care, palliative care and hospice
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Palliative care and hospice care have risen to the forefront of healthcare for the simple reason that they allow people to achieve the highest quality of life possible regardless of their diagnosis. They allow patients to focus on important aspects of their lives that make them feel whole again. — DAVID GONZALES MD, PRESBY TERIAN MEDICAL SERVICES
Home health 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. Many aspects of home health care may be covered by Part A Medicare.
Palliative care Palliative care does not cure the disease. It simply aims to eliminate physical and emotional discomfort to enable a deeper focus on living. Check with your insurance company to see if palliative care is covered. Any person, of any age, with any type of cancer, at ANY stage, may receive palliative care.
Hospice care Hospice care provides humane and compassionate 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 and is used when one’s life expectancy is approximately 6 months or less, if the illness runs its predicted course. Hospice care is focused on comfort and support for the patient and the whole family. 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 and is responsible for overseeing most of the care. For others without this support, organized care programs can lend a helping hand. Hospitals, independent hospices, nursing homes and long-term care facilities are all other potential hospice care options. 66
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Hospice model of care The hospice philosophy embraces the general principle of a comfortable death with dignity. The care and treatment provided are based on the patient’s and family’s goals and values. K n ow Hospice teams can include doctors, nurses, social workers, -day G o o d to p to five home health aides, pastoral workers, volunteers; and speech, care is u in r e Respite eith of time, physical and music therapists. a periods ity or in il c fa e ic You, your family and your doctors decide when hospice ital. p the hosp s o h r home o care should begin, and you and your family can start the nursing ds and ws frien o ay from conversation. This all time aw ome family s ing. iv g re ca
Hospice care 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
Finding hospice providers • Ask your doctor. • Contact the local Department of Health to get a list of licensed agencies. • Call the National Hospice and Palliative Care Organization at 800-658-8898 to get information on hospice programs in your area. For help 24 hours a day, contact the American Cancer Society’s National Cancer Information Center, 800-227-2345
Questions to ask potential hospice providers
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• Is the agency certified and licensed by a nationally recognized group, such as The Joint Commission? • Does Medicare certify it? • Is the program licensed? • Does the agency have the necessary consumer information such as outline of services, eligibility rules, costs, payment procedures, employee job descriptions and malpractice/liability insurance? • Are individual care plans created for each new patient? • Does the agency require you to have a primary caregiver as a condition of admission? • Are there positive references on file about the home care staff ? • How does the agency handle payment and billing? • Does the agency have a 24-hour telephone number to call with issues? Is there an emergency plan? • What are the inpatient care policies and how do they differ from services offered in the home? • How quickly can you start hospice care? The primary goal of all palliative and hospice care is to improve quality of life. Pay careful attention to how the hospice program responds to you when you first contact them. This will tell you a lot about the quality of care you can expect them to provide. If you decide to obtain or change your hospice provider, check with your insurance company to see what is covered. Talk to a hospital social worker about more options.
TIPS
SOURCES: American Cancer Society, American Society of Clinical Oncology’s Advanced Cancer Care Planning, www.cancer.net, Presbyterian Medical Services C.A.R.E. GUIDE
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Helping patients get the most out of life. At every stage of life. Presbyterian Medical Services provides complete hospice care, covering the medical, emotional and spiritual needs of our patients and their families. We provide home visits with a team of board-certified palliative care physicians who have over 100 years of combined experience. Santa Fe’s only non-profit hospice agency includes an experienced team of medical, nursing, home health, rehabilitation, bereavement and social work professionals. Medicare, Medicaid and private insurance accepted. Call The Hospice Center / Community Home Health Care at 505-988-2211 for more information.
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Cancer costs Many people feel unsure about bringing up money while planning their cancer treatment. But cost is something you should address up front. You want to 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 health care team. Some common costs include: Doctor visits Lab tests Clinic visits for treatments
Imaging tests/scans Radiation treatments Medication
Hospital stays Surgery Home care
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.
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Once you have a general picture of what your treatments will cost, you can ask these important questions: 1. Will I be able to get short-term or long-term disability payments? If you’re employed, contact your human resources department. Otherwise, contact the Social Security Administration at 800-772-1213, www.SSA.gov 2. What public or private resources will I be able to count on? See General Resources on page 40 in this guide for information on financial assistance for New Mexicans with cancer. Also, the Centers for Medicare and Medicaid Services provide information about patient rights, prescription drugs and health insurance. Contact 800-MEDICARE, www.medicare.gov 3. Where can I cut back expenses, and what other changes can I make so my money lasts through treatment? 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.
Keeping 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.
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You can work with this simple checklist, and update it as time goes on: • Add up monthly payments to hospitals, clinics, doctors, radiologists, and others involved in your treatment. • Note how each of these bills is paid — online or by mail — and when the bills are due. • List the contact information for the billing person or department for each of these bills. • Write down the last 4 digits of your social security number and your birthdate, as these are often required when you contact billing departments. • Write down the debit or credit card number used for payment, as well as the PIN number that goes along with o K n ow Good t it. Make sure that a family member or trusted friend knows n ce r o p o r t Ca w Mexic Th e s u p where the debit/credit cards are kept in case they need to n for Ne o ti a rn d e n Fou access them when you cannot do so. nor th vided to led has pro as doub h • List any public or private financial help you are getting, along s n a ic x e New M ears. No with the contact names and phone numbers. three y t s la e in th fies for • Finally, review your monthly budget to see where you are on at quali th t n e as been ti pa tance h track and where you need to make adjustments. is s s a l financia away. Visit healthcare.gov/glossary/ for a list of helpful terms turned SOURCES: American Cancer Society, Cancer Services of NM, and Cancer Foundation for NM, National Cancer Institute
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Be sure about your insurance Many people living with cancer feel overwhelmed with the paperwork and the complex rules about paying for treatments. 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. It’s also a good idea to bring a trusted friend or family member with you so they can help note down the answers: • Will my insurance cover my treatment? • Does my health insurance company need to approve the treatment plan before I begin treatment? • Is the treatment facility you are recommending in my insurance plan’s network? • How much will my out of pocket cost be? • What if I can’t afford the out of pocket cost? Will I be turned down for treatment? • Are my medications on my health insurance plan’s preferred drug list? • What is my prescription co-pay for each medication? • Will I be billed separately for laboratory tests, such as blood tests? Are they covered under my health insurance? • Do you offer any payment plans?
Cancer Services of New Mexico’s free Legal, Insurance, & Paperwork Assistance (LIPA) Program is the best place to get clear answers to these 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 has three major elements: • 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 (www.nmcancerhelp.org) — This provides links to a wealth of resources to help with legal, insurance and financial issues. The LIPA program is provided at no cost to New Mexico cancer patients and survivors and their family members and loved ones. For more information, go to www.nmcancerhelp.org or contact Stephanie Michnovicz, Cancer of New Mexico program manager, at 888-668-276
TIP
Check out www.bewellnm.com and www.nmcancerhelp.org to become more familiar with insurance plans. Go to www.healthcare.gov/glossary/ for a comprehensive list of insurance related terms Use the My Tracking Sheet on page 33 in this guide to help match up treatment dates insurance bills.
SOURCES: Cancer Services of NM, www.nmcancerhelp.org, www.bewellnm.com C.A.R.E. GUIDE
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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:
Legal Insurance Paperwork Assistance (LIPA) LIPA is the only program in New Mexico providing comprehensive assistance with cancer-related legal, insurance and paperwork issues. Services are available at no charge to any New Mexican coping with cancer. Contact Stephanie Michnovicz, Cancer Services of New Mexico program manager, 888-668-2766
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 and older. LREP staff attorneys provide legal advice and brief services in most areas of civil law. Two of LREP’s attorneys are fluent Spanish speakers. 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 Bar Association holds free legal workshops to learn about powers of attorney, advanced care directives, estate planning and long-term care Medicaid planning. www.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 SOURCES: Cancer Services of NM, www.nmcancerhelp.org, National Cancer Institute
TIP
Work on these items while you have energy, strength, and feel healthy. It’s crucial to take care of these things that are so important for you and your family — so that you can move on and focus on enjoying life!
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Putting your “house” in order
When you move to a new town or even a new house, you want to get settled and organized right away so you can explore the neighborhood with less stress. A cancer diagnosis is very similar to a major move, and the sooner you can make basic legal plans and put them into place, the more comfortable you’ll be. You’ll have done everything in your power to look toward the future so you can live each day to the fullest right now. Putting your “house” in order as such is critical. The top three legal documents you need to create or update all have to do with making sure your wishes about medical care are made known and carried out. These documents will make it much easier for your loved ones and medical team to do what you want without struggling on their own to make a choice. If you don’t have these documents in place, and haven’t told your doctor who you want to act as your “agent” or voice in medical decisions, the doctor is legally bound to go to these individuals for decisions: 1) your spouse, 2) your domestic partner, 3) your adult sons and daughters, 4) adult brothers and sisters, 5) grandparents and 6) an adult friend who is familiar with your wishes.
Power of Attorney This is a legal document that allows you to choose a person who will have the power to act in your place, with your voice. The person you name will be legally permitted 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. C.A.R.E. GUIDE
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Everyone deserves to have a plan in place. End of life planning with dignity and care.
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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.
Questions to think about:
• How do I feel about long-term life support, if needed? • How would I feel about receiving a blood transfusion? • How would I feel about being artificially fed fluids and food? • Would I choose to have CPR, depending on its predicted success?
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 are carried out.
Remember…
• You have the right to make your own health care decisions • You have the right to all of the information you need to make those decisions • You can make some decisions in advance
SOURCE: CHRISTUS St. Vincent “Your Right to Decide,” National Cancer Institute 74
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“I have a question…” There are so many questions that will arise throughout the journey, for all involved. It is impossible to know what to ask. Here are some answers provided in consultation with cancer survivors, caregivers, and professionals.
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time, or after a death of someone’s loved one, know that it is fine to say “I am not sure how to be there for you and often don’t know what to say. Please let me know what you need.” A very good book for helping in this situation is “When Life Becomes Precious: The *Rhona S. Levine, Essential Guide for Patients, Licensed Marriage Loved Ones, and Friends and Family Therapist of Those Facing Serious Illnesses.” by Elise Needell Babcock.
I know my caregiver and friends mean well, but I want to do things on my own. How can I do this? ~ “Struggling with Independence” Talk with them and be specific about which activities you enjoy doing and need to do to maintain normalcy and dignity. Caregivers often forget to ask the patient what they want. Be receptive to their feedback if some of those chores are detrimental to your health. Break down tasks and compromise on what they will help you with and what you can and will continue to do. It’s okay to want independence, but it is also necessary to recognize that some tasks require help. My father and I are trying to take care of my mother, but we keep fighting over who does what and what is best for her. What should we do? ~ “Clashing Caregivers” Some people have found it to be useful to assign a coordinator who organizes the contributions. An excellent resource is available at www.sharethecare.org. In “Together,” my caregivers group, we identify the “quarterback,” the one calling “the plays.” Often this role shifts to different people as the needs of the patient changes. Also, find the best person for each task. For example, don’t assign someone to drive when they don’t know the area or are a terrible driver. My wife is changing- physically and mentally. It is hard for us to interact like we used to. How can I internally resolve this? ~ “Helpless Husband” We call this the “New Normal.” It will take time to adjust to these changes and better to recognize them than to pretend they are not there. She is selfconscious about them as well. Talk with her, find out how she feels now, reminisce about the good times you’ve had, and try to have quality time together. My friend won’t return my phone calls. I know she is dealing with her sister’s cancer. I don’t know how to truly be there for her or what to say. How can this situation not affect our friendship negatively? ~ “Friend at a loss” A difficult situation requires different responses. Know that your friend wishes she could be as responsive to you as she used to be. In fact, it affects her more than you think. Your friendship will change, and how “present” you are for her during this time will be a key part of your ongoing friendship. Stay patient with the disengagement, but don’t stop reaching out. She might not respond but your efforts will make a positive difference in your friendship. Whether it be during this
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I’m frustrated and hurt because my sister seems disengaged from my father’s diagnosis and won’t talk to me about it. How do I deal with her? ~ “Saddened Sibling” Try to remember that everyone deals with illness differently. This is a time to band together, so try not to hold her coping mechanism of denial against her. Have a conversation about how you both will approach communicating about your mother’s diagnosis in the future, and try to compromise on something that you both feel comfortable with. It may be necessary to meet with a professional to facilitate communication. Put your energy into finding best ways for YOu to cope. Every time we have a test or scan coming up, the house gets really tense and we all start to fight. Is it the appointments or what is going on? How can we prevent this from happening in the future? ~ “Frustrated Family” It is very natural to anticipate and worry about the outcome of a test or scan. To some degree, this anxiety will always be there. The patient and family always remember the first time they had the unanticipated bad news. Try to increase your “sturdiness” so that you are better able to cope with an upcoming test and results. As a family, recognize this time may be tense. Everyone may respond differently in this situation. It is really hard for me to let my family know the financial struggles we are in. I want to take care of it all, but I am tired. How do I manage the finances and communicate the reality with my family without causing them alarm or feeling embarrassed? I just want to make sure they are taken care of. ~ “Protective Patient”
One piece of advice does not apply to everyone. Each journey is different and everyone will navigate through it a bit differently. However, for anyone who finds themselves feeling uneasy about a situation, the key is to talk to someone about your feelings. They may provide guidance or you might just feel better by talking through it all. You aren’t expected to know all the answers!
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This is the time that you need your family to be “in the know.” Whether it is regarding your health or the finances, it is crucial that you communicate with them and ask for what you need. The best way to take care of yourself and the family is to bring them into your confidence, and in that way you can work out these issues together as a family. It doesn’t need to be something you take on alone. Remember that no one on the illness continuum can handle everything. Share a little bit at a time if that makes this transparency more manageable. One of my employees told me they have cancer. I notice their mood swings from day to day and see when their current situation is affecting them. I want to be there for them but don’t want to pry. How can I keep our relationship professional, while still letting them know I care? ~ “Concerned Boss” You are in a unique role. You have the opportunity to get the employee’s mind off of illness and focus on the future. Utilize your position by finding out what tasks and projects they enjoy. Know that it is okay and will be appreciated by your employee for you to ask how they are doing. Those living with cancer and others affected by a diagnosis (caregiver) feel cared for when this happens in a genuine way. If you ever see that they change the topic, then drop it. If they talk about it, engage with them. They may have insecurity about job performance or the future of the position, so give positive feedback when you can, as well. My mother just recently passed away from cancer. I’m having a hard time coping with it. My friends are trying to help but whatever they say doesn’t make me feel better. ~ “Grieving and Searching” Dealing with the loss of a loved one is never easy. Regardless of how it happens, one can never be truly prepared for it. Time won’t eliminate your hurt, but it may help you to heal a bit. Know that your friends might not know how to help, and truth be told, there won’t be things that they can do to “fix” your situation. Help them help you by letting them know what you need at any given time. It may be a hug, space, a
conversation, or activity of retreat. There is no right or wrong way to feel. We don’t “get over” loss, we learn how to adapt to it. Allow yourself to mourn and share your feelings with others, so that they best know how to comfort you. A grief support group is often helpful because those in the group understand your feelings.
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I became a caregiver six months ago, yet still face some of the same fears and issues that occurred shortly after my loved one’s diagnosis. I feel like I should have mastered this experience by now, and not get so affected. How do I stop kicking myself for feeling this way? ~ “Disappointed Caregiver” You are doing the best you can, and the myriad of feelings continually reoccurs. Cancer is cyclic in how it affects people, and the different stages of cancer bring different emotional responses. It’s important to focus on who you are caring for and not put yourself down. The patient needs your strength, and criticizing yourself over your performance will wear you down. Self-care is very important for the caregiver because you have to be healthy to care for the patient. Call one of your positive friends or family members to give you a morale boost. Join a caregiver’s support group where others understand your feelings and will give you much needed support. Passages in Caregiving by Gail Sheehy and No Saints Around Here: A Caregiver’s Days by Susan Allen Toth are good resources. I have been in remission for about five years now. My immune system is terrible, and my body has not fully recovered from the chemotherapy I had. Is this normal? Will I ever have the same energy that I used to? ~ “Curious Cancer Survivor” The way treatment affects people, varies from individual to individual. Some people are able to return to their “normal” pre-cancer energy and feelings. However, in some cases, the effects of treatment might not ever go away. Every body reacts differently. It’s important to keep your spirits up and continue to spend your daily life as healthy as possible, to maximize how you feel every single day from this point forward. Talk to your oncologist and primary care physician about your concerns. FOr prOFessIOnal guIdance and suppOrt, reacH Out tO One OF tHese lOcal servIces
*Cancer Foundation for New Mexico Carolyn Owen, Patient Services Coordinator • 505-955-7931 CHRISTUS St. Vincent Counseling Support Karen Gano, LMSW • 505-913-5731 UNM Cancer Center Psychology Services • 505-925-0104 Oncology Social Work • 505-272-4946
I want to help Throughout New Mexico, there are wonderful opportunities to make a difference in people’s lives and advance the work to eliminate cancer.
Cancer Foundation for New Mexico in Santa Fe needs: • Workers at the Sweetheart Auction in February • Personal support for patients in the chemotherapy treatment area • Fluent Spanish speakers to help translate during exams and treatment Contact Caroline Owen, 505-955-7931, ext. 3
Cancer Services of New Mexico needs: • Volunteers and exhibitors at spring and fall Cancer Retreats Contact Mike Capeless, mike@cancerservicesnm.org, 505-239-4239
UNM Cancer Center Volunteer Program, 505-925-0188
American Cancer Society needs: • Emotional and peer support through resources referrals in Santa Fe or Albuquerque • Volunteers to assist patients with wigs, scarves and information through the Look Good Feel Better program
• Volunteers to drive patients to treatment through the Road to Recovery program Contact 1-800-227-2345
• Breast cancer survivors to provide peer support through the Reach to Recovery program • Licensed cosmetologists to provide makeup courses and free makeup through the Look Good, Feel Good program Contact Brian Anderson, brian.anderson@cancer.org, 505-262-6029
Planning committees in Santa Fe and Albuquerque Making Strides Against Breast Cancer Contact Mike Ely, SantaFeNMStrides@cancer.org, 205-262-6025
Relay for Life Contact Manual Luna, manuel.luna@cancer.org, 505-262-6022, or Nikki Duran, nikki.duran@cancer.org, 505-262-6026
Gala Contact Joe Cordova, joe.cordova@cancer.org, 505-262-6015 Advocacy through recruitment, fundraising, and writing letters to lawmakers
Cancer Action Network Contact Lacey Daniell, lacy.daniell@cancer.org, 505-262-6014 C.A.R.E. GUIDE
77
2015 Appointment and Special Event Calendar
JULY
A handy place to keep track of your appointments, scans, and treatments and to learn about upcoming community events and programs. Keep this with you to stay organized!
Sunday
Monday
Tuesday
1
MARCH Sunday
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Friday
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4Colorectal Cancer
Multiple Myeloma Kidney Cancer
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Hoops4Hope: House Aggies vs. Senate Lobos, 7pm, $5, SF High. Benefits UNM Cancer Center
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APRIL AUGUST Sunday
28 Long-term Effects of Survivorship Conference of ABQ Cancer Services of NM
Testicular Cancer Esophageal Cancer Head and Neck Cancer
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C.A.R.E. GUIDE
*Awareness months and ribbon colors source: www.choosehope.com
SEPTEMBER MAY Sunday
Monday
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Melanoma and Skin Cancer Brain Cancer
Wednesday 2
Thursday 3
Friday 41
Saturday 52 Coaches vs Cancer Gala of ABQ American Cancer Society
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Black and White Gala of Santa Fe American Cancer Society
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OCTOBER JUNE Sunday
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National Cancer Survivors
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C.A.R.E. GUIDE
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JULY Sunday
Sarcoma Bladder Cancer
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Relay for Life Santa Fe and Rio Rancho July 24, 25 American Cancer Society
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31 Relay for Life - ABQ July 31, Aug. 1 American Cancer Society
AUGUST Sunday
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Saturday 1 Relay for Life - ABQ July 31, Aug. 1 American Cancer Society
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C.A.R.E. GUIDE
SEPTEMBER Sunday
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Monday
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Tuesday
Childhood Cancer Ovarian Cancer Gynecological Cancer Prostate Cancer Leukemia/Lymphoma Thyroid Cancer
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Fall Family Cancer Retreat in ABQ (Sept. 11, 12, 13) Cancer Services of NM
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Los Alamos Health Fair Los Alamos Medical Center
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OCTOBER Sunday
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Breast Cancer Liver Cancer
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Saturday 3 Making Strides Against Breast Cancer - Santa Fe American Cancer Society
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C.A.R.E. GUIDE
81
24
Making Strides Against Breast Cancer - ABQ American Cancer Society
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NOVEMBER Sunday
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Pancreatic Cancer Lung Cancer Stomach Cancer
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Carcinoid Cancer Caregivers Month
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C.A.R.E. GUIDE
February 2016: Cancer Foundation for NM, Sweetheart Auction (Date TBD) American Cancer Society, Cancer Awareness Day at the Capitol (TBD)
Maximizing the value of healthcare for all New Mexicans.
Get to know us We were one of 16 communities, under the Robert Wood Johnson Foundation effort, to bring people and organizations together to improve quality of care and engage consumers to make informed choices about their own health and health care.
Our members We have a diverse membership comprised of those who pay for care, provide care, and receive care.
Our focus is on value and transparency We are the state’s only multi-stakeholder nonprofit focused on improving the value of healthcare for all New Mexicans.
Join Us We have a common goal for New Mexico – to have the most affordable, highest quality healthcare in the nation – a key to attract and retain jobs and improve the health of all New Mexicans. We have a good foundation, but need your help and input as we move forward.
New Mexico Coalition for Healthcare Quality To join us, visit our website at www.nmhealthcarequality.org
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.
490A West Zia Road Santa Fe, NM 87505
(505) 913-8900