Actress Charlotte Rae, best known for her role as Mrs. Garrett on
“The Facts of Life”, sits down to discuss her battle with pancreatic
cancer, and how getting checked out can give you an early warning.
http://www.aol.com/video/youve-got-charlotte-rae/517457963/
The Lustgarten Foundation - Denver, Colorado Chapter. This is the official blog of the Denver Pancreatic Cancer Research Walk (formerly the Rich Phillips Memorial Walk), a fundraiser held each year in November. The walk benefits the Lustgarten Foundation and their mission to find a cure for pancreatic cancer through research. Help us help us find a cure and support those battling pancreatic cancer and their families here in Colorado.
Who we are.
Join the fight against pancreatic cancer! The 2015 Pancreatic Cancer Research Walk is Sunday, November 1st at Sloan's Lake Park, Denver, CO.
All the money raised goes directly to pancreatic cancer research thanks to the Lustgarten Foundation!
Wednesday, August 29, 2012
Monday, August 20, 2012
Finding Resources ...
Sometimes you just need to dive in and read about the journey ahead ... here is a list of books available on Amazon related to pancreatic cancer ...
Pancreatic Cancer: A Patient and His Doctor Balance Hope and Truth (A Johns Hopkins Press Health Book) by Michael J. Lippe and Dung T. Le (May 2, 2011)
Johns Hopkins Patients' Guide to Pancreatic Cancer (Johns Hopkins Medicine) by Nita Ahuja and JoAnn Coleman (Dec 22, 2010)
The Ride Of My Life: A Fight To Survive Pancreatic Cancer by Bob Brown (Nov 23, 2011)
100 Questions & Answers About Pancreatic Cancer, Second Edition by Eileen O'Reilly and Joanne Frankel Kelvin (Sep 22, 2009)
Pancreatic Cancer by John P. Neoptolemos, Raul A. Urrutia, James Abbruzzese and Markus W. Büchler (Jan 22, 2010)
Defeat Cancer: 15 Doctors of Integrative & Naturopathic Medicine Tell You How by Connie Strasheim, 13 Cancer Doctors, Richard Linchitz MD and Robert Rowen MD (May 6, 2011)
Pancreatic Cancer (M.D. Anderson Solid Tumor Oncology Series) by Andrew M. Lowy, Steven D. Leach and Philip Philip (Aug 25, 2008)
Surviving: How We Loved Through Pancreatic Cancer by K. Blake Cash (Aug 10, 2011)
The Last Lecture by Randy Pausch and Jeffrey Zaslow (Apr 8, 2008)
Pancreatic Cancer : A Simple Guide to Pancreatic cancer (Simple Solutions Presents) by Hope Foster (Dec 9, 2011)
Saturday, August 18, 2012
Finding Hope -- When you need it most
There's no place like hope: a guide to beating cancer in mind-sized bites
Recommended by one our Denver families ... Presenting a survival guide for cancer patients and their families, Girard herself is a cancer survivor and has become one of the nation's most outspoken advocates on patient rights and improving care. According to Girard, "Cancer is a beatable, treatable, survivable disease".
Thursday, August 16, 2012
Sen. Pat Steadman and Rep. Edward Casso face personal tragedies
Two state lawmakers are battling personal tragedies.
Sen. Pat Steadman's partner of 11 years was diagnosed with an aggressive and deadly form of cancer.
And Rep. Edward Casso's former wife is dead at the age of 36, the
result of a perforated ulcer that lead to septic poisoning. He said
their two young children are heartbroken.
Both men said their colleagues in the legislature have rallied around them.
"It's been really hard," said Steadman, a Denver Democrat.
His
partner, Dave Misner, is a frequent visitor to the state Capitol, and
was present in the Senate chambers this year when Steadman presented his
bill to allow gay couples to form civil unions.
The couple also regularly attends a variety of political events together.
Steadman said Misner was diagnosed last week with pancreatic cancer. It is too advanced for surgery.
Steadman
said Sen. Lucia Guzman, D-Denver, has been with him throughout the
ordeal. Guzman was a close friend of former state Sen. Paul Sandoval, who died this year after his battle with pancreatic cancer.
Like Sandoval, doctors initially thought Misner had ulcers.
In
addition, House Minority Leader Mark Ferrandino, D-Denver, and his
partner, Greg Wertsch, were at the hospital. The two gay couples are
extremely close.
Steadman said he and his partner met with an
oncologist Tuesday to talk about chemotherapy. He said he is optimistic
because Misner is only 48 and otherwise is in great health. He walks
nearly 10 miles a day in his job with the city of Denver's parking
enforcement division.
He said the autopsy report
indicated her death was linked to her ulcer and septic poisoning. Among
the lawmakers at her services were Reps. Sal Pace of Pueblo and Ed
Vigil of Fort Garland. Casso is a Commerce City Democrat.
Casso said he is grateful that he had their two kids, Cecelia, 13, and Aristotle, 11, with him the weekend his wife died.
"Seeing my kids like this, it has been horrible," he said. "They are very, very sad."
Casso
was a student at the University of Colorado when he met Selena Romero
at a sorority party at Colorado State University. They were married in
1997. The couple divorced in 2008 but had maintained a relationship
because of their children.
"It's been hard on everyone," he said.
Lynn Bartels: 303-954-5327 or lbartels@denverpost.com
Read The Denver Post's Terms of Use of its content: http://www.denverpost.com/termsofuse
Sunday, August 12, 2012
Alternative Care
What is Acupuncture?
Acupuncture is a form of ancient Chinese medicine in which fine, sterile needles are applied to specific areas of the body, or acupoints, to stimulate energy flow (or “chi”). The needles are usually left in place for a few minutes (skilled acupuncturists cause virtually no pain). Energy is believed to circulate throughout the body along specific pathways called meridians.When energy is flowing freely through the meridians, the immune system is stimulated, which is thought to bring on a healing response and balance. When the flow of energy is disturbed or off-balance, pain or illness may occur. A goal of acupuncture is to restore balance and healthy energy flow to the body to control pain and other symptoms.
Worldwide, acupuncture is sometimes used for conditions in which conventional approaches have failed, or as a complement to traditional medicine. In the United States and Europe, acupuncture is primarily used to control pain and relieve symptoms of disease, but not to cure the disease itself. Some people find acupuncture useful for helping to stop an addictive behavior, such as smoking or alcoholism. Others may find it useful for relieving ailments such as headaches, low back pain, fibromyalgia, asthma, or carpal tunnel syndrome.
Acupuncture in Cancer Care
Acupuncture is not used by itself as a treatment for cancer. Rather, it is used in combination with advanced cancer treatment options to help relieve symptoms related to cancer. In some cases, acupuncture may help to alleviate treatment-related side effects, such as nausea and vomiting, as well as other common symptoms, such as stress. Some individuals also find that acupuncture helps relieve fatigue, pain and neuropathy associated with cancer and its treatment.Friday, August 10, 2012
Nutrition in Cancer Care
There is a lot you can do to give yourself the best chance to win the fight against cancer. Staying nutritionally fortified is one positive way to take control of your life and your well- being. Optimal nutrition allows your body to function at its best. Maintaining optimal nutrition can provide several benefits for people living with cancer, including:
- Support immune function
- Preserve lean body cell mass
- Rebuild body tissue
- Decrease your risk of infection
- Improve strength and increase energy
- Improve your tolerance to treatment
- Help you recuperate faster after treatment
- Improve quality of life
Dietitians can help by making recommendations for how to keep you nourished with healthful foods and a well-balanced diet. Dietitians are health professionals with extensive training in nutrition who help with dietary choices.
Nutrition at CTCA
The Nutrition Metabolic Support Department at Cancer Treatment Centers of America (CTCA) aims to keep you strong and nutritionally balanced so your cancer treatment is not interrupted. The department is led by licensed and registered dietitians who provide expert care for you through comprehensive nutrition assessment, education and supplementation—with an emphasis on proactive nutrition intervention. Our goal for you is to prevent malnutrition, reduce side effects, promote positive healthy eating habits, and enhance your overall well-being and quality of life.Nutrition Assessment and Plan
Upon your arrival at a CTCA hospital, you will be automatically scheduled to meet with one of our dietitians, who will be assigned specifically to you. At that time, you will receive an individualized, comprehensive nutrition assessment and plan. The assessment may include:- Laboratory analysis of the blood – this determines the status of your immune system (immunocompetence) and protein stores
- Medical history and nutrition interview – this provides the nutrition team with insight into your appetite, food preferences, the status of your digestive system, and any existing or potential complications
- Nutrition anthropometrics – we will take body measurements to determine your percent of body fat and loss of lean tissue
- Indirect calorimetry – a simple breathing test to measure the amount of oxygen consumed (to assess your calorie requirements)
- Computerized diet profile – a three-day nutrient intake analysis completed by you
- Nitrogen balance – a measurement of protein loss to determine if your body is using protein properly
Nutrition Therapies at CTCA
Personal Meal Plans
Adequate protein, calories and high-nutrient foods are essential during this time. As part of your care plan, your dietitian will recommend dietary options specific to you, including immune-boosting foods designed to reduce the toxicity of your cancer treatment. The goal is to complement your advanced cancer treatments with the fortifying effects of nutritional support.Your dietitian will also work closely with our food service department to combine maximum nutritional benefits with spirit-lifting food enjoyment. The foods suggested in the meal plans are available in the dining rooms in each of our CTCA hospitals. Our dietitians will often implement new research findings into the menus. Selections include fish, poultry, legumes, low-fat yogurt, fruits and vegetables, whole grains and cereals, and other healthy food choices. We also offer a variety of protein powders and supplements to make sure you are getting the necessary nutrients if you are not able to keep whole foods down. We want to ensure that you receive a well-balanced diet rich in phytochemicals, vitamins and minerals.
Vitamin and Mineral Supplementation
Vitamin and mineral supplements provide nutrients that your diet may not, and offer a boost where illness may have depleted your body. The CTCA supplementation plan includes nutrients that may help support your immune system and reduce toxic side effects. Your care team at CTCA may recommend daily dosages of various nutrients, including:- Beta carotene
- Selenium
- Vitamin C
- Eicosapentaenoic acid (EPA)
- Vitamin E
- Others as appropriate
Nutrition Education
In addition to making dietary suggestions and helping design meal plans, our nutrition team provides continued support through education, including programs and classes on the relationship between a healthy diet and wellness. We aim to empower you with information and guide you in maintaining proper nutrition. CTCA also offers a weekly nutrition class and a monthly cooking class. These classes feature presentations on cooking with herbs, protein and calorie supplements, nutrition and cancer, superfoods, immune boosting foods, healthful cooking and more.Nutritional Support
Should you require nutritional support, the dietitians from the nutrition team at CTCA, along with a physician, nurse and pharmacist, will work closely with you to make sure you receive proper nourishment. If you are unable to eat or digest food, we will provide nutrition parenterally (through a vein) or enterally (through a feeding tube).Learn More: Healthy Recipes for Cancer Patients & Nutrition Tips
Watch the Wholesome Temptation™ cooking videos at the top of this page and order your copy of the Wholesome Temptation cookbook for delicious recipes we’ve developed for our patients.For helpful nutrition tips, read our newsletter on the role of nutrition in cancer care. To subscribe to our free monthly e-newsletter, visit the CancerCenter Newsletter Sign Up page today.
Wednesday, August 08, 2012
Mono Rides
Mono was born in 1981 in the Mission district, on the morning of August the 19th at 6:09 am . He is part of a set of fraternal twins, his sister Isa now lives in the Seattle area. As a child he showed a great deal of imagination and was good at creating playing time. At a very early stage he showed generosity of spirit and was willing to be helpful to his friends in a very unselfish way.
He was always good with younger friends and was protective of them. His love for Nature was his motivating force, it was in a natural setting where he excelles, there he found he had a natural ability to survive in the wild, thus rock climbing became his passion. Los Padres National Forest, High Sierras, Mount Whitney, Yosemite and several local National Forest are a few of the experiences he has shared with many of the members of his growing community.
In his teenage years he was part of the Urban Pioneers, a program in the school District now defunct. There he put to practice his talents acquired in Nature. He showed that he had leadership ability.
He has his own sense of creativity, he is an artist, muralist and he has a gift for music. He was raised in a open and independent way, both parents artists and involved personally in the community where they live. At this point he is embarking on a journey of endurance on behalf of the victims of pancreatic cancer, specially paying tribute to his long time friend and roommate Eric G. Chavez. He is proposing to bicycle from San Francisco to New York City a total of 4,000 miles. Mono will perform this task with the help of a network of his family, sponsors and well wishers.
Bio Written by: Jorge Molina & Mari Gro Wiig
http://www.monorides.com/About.html
Tuesday, August 07, 2012
U.S. News & World Report's Best Hospitals
U.S. News & World Report's Best Hospitals
MD Anderson consistently
tops cancer rankings
For the sixth year in a row, and the ninth time in the past 11 years, The University of Texas MD
Anderson Cancer Center earned the No. 1 spot in U.S. News & World
Report’s annual rankings of the best hospitals for cancer care.Since the survey began in 1990, MD Anderson has been ranked every year as one of the top two hospitals in the nation for cancer care.
MD Anderson also is ranked No. 4 in Texas, is recognized among the Best Hospitals in the Gulf Coast (Texas), and is ranked No. 3 in the Houston metro area.
Sunday, August 05, 2012
Hepatitis B May Up Pancreatic Cancer Risk
CancerWise - December 2008 (MD Anderson)
Researchers at M. D. Anderson published these findings, the first of their kind, in the Oct. 1 edition of the Journal of Clinical Oncology.
Significance of results
Pancreatic cancer is diagnosed in 37,000 people in the United States each year, and more than 34,000 people die of the disease annually, according to the American Cancer Society. It often is diagnosed in the late stages, and few risk factors are known."If this study is validated, it will give us more information about the risk factors for pancreatic cancer and possibly even help prevent it in some cases," says lead author Manal Hassan, M.D., Ph.D., assistant professor in M. D. Anderson's Department of Gastrointestinal Medical Oncology.
HBV and hepatitis C virus (HCV) are major global health problems, affecting about 2% of the population worldwide.
Background
The word "hepatitis" means "inflammation of the liver." Previous research has shown HBV and HCV are major causes of liver cancer, but little is known about their roles in other cancers.However, the liver is close to the pancreas, and the two organs share blood vessels and ducts. This makes the pancreas a potential target for hepatitis viruses.
Other research has indicated chronic HBV infection may impair pancreatic function and that HBV may grow in the pancreas.
Research methods
This study, which began in 2000, included:- 476 M. D. Anderson patients with early pancreatic cancer
- 879 people without pancreatic cancer
Researchers tested the blood of all participants for HCV and HBV antibodies, which indicate past exposure to HCV and HBV.
Primary results
The percentage of people who had past exposure to HBV were:- 7.6% of pancreatic cancer patients
- 3.2% of people without pancreatic cancer
Additional results
The study confirmed previously reported risk factors for pancreatic cancer: cigarette smoking, diabetes and a family history of the disease.People exposed to HBV may develop occult (hidden) HBV infection. In these cases, the M. D. Anderson researchers say, there is a potential for reactivation of HBV during chemotherapy, the most common treatment for pancreatic cancer.
What’s next?
Hassan stresses that these early results need further study. The researchers plan to work with other institutions to compare results among other groups. They also want to study people who are actually infected with the virus.If they are confirmed, these results may offer new insight into pancreatic cancer, possibly preventing some cases in the future.
Friday, August 03, 2012
Tips for Caregivers
This is information was posted on MD Anderson's website. But whether you are going to MD Anderson, or staying right her in Colorado, this is a great resource.
Any time parents must bring their child to the Robin Bush Child and Adolescent Clinic for a doctor’s appointment or treatment, a number of factors can influence the flow of their day and their overall clinic experience.
Some of these factors are out of the control of caregivers, but there are ways to help make a child’s visit run more smoothly by taking a few proactive measures.
With the input of parents and nurses, the Children’s Cancer Hospital has a few recommendations to enhance the patient experience at the clinic
1. Arrive on time – It’s important to arrive on time for your scheduled appointment. Although you may have a wait time, arriving late will not only delay your schedule further, but it will also affect the schedules of other patients who have appointments that day. If you are running late, please call the clinic desk at 713-792-6611 to let your health care team know.
2. Consider an early blood draw – Due to the large volume of blood samples that are processed daily at M. D. Anderson (especially in the mornings), the Children’s Cancer Hospital often is delayed in receiving results that are vital for doctors to make decisions about treatment. The Children’s Cancer Hospital and the Family Advisory Council recently created some options to help bypass the long waits for results the morning of a patient’s appointment.
4. Bring the essentials – Wait times can be longer than expected. Come prepared with snacks for your child or any other essentials, such as diapers, formula and items for special dietary needs.
5. Bring “comfort” items – Visits to the hospital can mean anxiety for a child. Pack items such as a favorite toy, stuffed animal or blanket that will make the child feel more comfortable. Also, if you have books, coloring pads, a portable DVD player or mp3 player, bring those as well. These can help distract your child during the wait time. Some parents have used these accessories to occupy a child’s attention while the parent talks to the doctor in the exam room. If you bring any portable electronics, throw in a pair of earphones to help keep the noise at a desirable level in the waiting area.
6. Bring a notepad and pen – During the doctor’s appointment, you will receive essential information regarding your child’s treatment and progress against his/her cancer. Take a notepad or an audio recorder to document the information to have for later use. Some parents bring another family member or friend to be in charge of taking notes. Also, use this notepad to keep track of your child’s reactions to treatment and write down questions for your doctor to bring to your exam visit.
7. Prohibit food and drink intake before procedures – When your child is scheduled for a bone marrow aspiration, spinal tap or any scan with sedation, do not let the child have any food or drink the day the procedure is scheduled. This will only result in the procedure having to be rescheduled. Remember to bring a snack, though, to give to your child once the procedure is over. If you have any questions regarding fasting before procedures, please ask your health care team.
8. Leave the front desk or nurse with contact information – If you must leave the clinic waiting area for any reason, leave the front desk assistant or your nurse with a way of reaching you, such as a cell phone number (in addition to the M. D. Anderson pager you may receive). This way someone can reach you quickly if you are needed back at the clinic.
9. Be aware of children sensitive to food in the clinic – If you bring food to the waiting area, please be considerate of patients who may be sensitive to food smells or other strong odors due to their chemotherapy causing nausea. This also applies for children fasting before a procedure.
10. Don’t hesitate to ask questions – You are a vital member of your child’s health care team, and you play an important role in enhancing your child’s experience at the hospital. If you are unsure about your upcoming schedule, or don’t know where to find a location for an appointment or have any other questions, don’t hesitate to ask. Your health care team, child life specialists and other staff in the clinic are there to partner with you to help make your day go as smoothly as possible.
Any time parents must bring their child to the Robin Bush Child and Adolescent Clinic for a doctor’s appointment or treatment, a number of factors can influence the flow of their day and their overall clinic experience.
Some of these factors are out of the control of caregivers, but there are ways to help make a child’s visit run more smoothly by taking a few proactive measures.
With the input of parents and nurses, the Children’s Cancer Hospital has a few recommendations to enhance the patient experience at the clinic
1. Arrive on time – It’s important to arrive on time for your scheduled appointment. Although you may have a wait time, arriving late will not only delay your schedule further, but it will also affect the schedules of other patients who have appointments that day. If you are running late, please call the clinic desk at 713-792-6611 to let your health care team know.
2. Consider an early blood draw – Due to the large volume of blood samples that are processed daily at M. D. Anderson (especially in the mornings), the Children’s Cancer Hospital often is delayed in receiving results that are vital for doctors to make decisions about treatment. The Children’s Cancer Hospital and the Family Advisory Council recently created some options to help bypass the long waits for results the morning of a patient’s appointment.
- Have your blood drawn in the outpatient clinic the day before your appointment. Afternoons between 2 – 4:30 p.m. are the best times to come in, and a $5 parking voucher will be given to those who come for blood draws the day before appointments.
- Have your blood drawn at the Rotary House the evening before your appointment between 6 – 8 p.m., Sunday through Thursday. You can register at the Patient Guest Relations Office on the first floor of the Rotary House. These blood draws are done by accessing the vein directly (usually in the forearm). Central line catheters (Ports, broviacs, etc.) cannot be accessed for pediatric patients by lab staff.
- Have your blood drawn at Bay Area Medical Oncology Labs (18100 St. Johns Drive, Nassau Bay, TX) the day before your appointment from 8 a.m. – 4 p.m., Monday – Friday. Results are available quickly and entered into the patient’s medical record. No appointment is needed. Like the Rotary House draws, central line catheters cannot be accessed for pediatric patients by lab staff.
4. Bring the essentials – Wait times can be longer than expected. Come prepared with snacks for your child or any other essentials, such as diapers, formula and items for special dietary needs.
5. Bring “comfort” items – Visits to the hospital can mean anxiety for a child. Pack items such as a favorite toy, stuffed animal or blanket that will make the child feel more comfortable. Also, if you have books, coloring pads, a portable DVD player or mp3 player, bring those as well. These can help distract your child during the wait time. Some parents have used these accessories to occupy a child’s attention while the parent talks to the doctor in the exam room. If you bring any portable electronics, throw in a pair of earphones to help keep the noise at a desirable level in the waiting area.
6. Bring a notepad and pen – During the doctor’s appointment, you will receive essential information regarding your child’s treatment and progress against his/her cancer. Take a notepad or an audio recorder to document the information to have for later use. Some parents bring another family member or friend to be in charge of taking notes. Also, use this notepad to keep track of your child’s reactions to treatment and write down questions for your doctor to bring to your exam visit.
7. Prohibit food and drink intake before procedures – When your child is scheduled for a bone marrow aspiration, spinal tap or any scan with sedation, do not let the child have any food or drink the day the procedure is scheduled. This will only result in the procedure having to be rescheduled. Remember to bring a snack, though, to give to your child once the procedure is over. If you have any questions regarding fasting before procedures, please ask your health care team.
8. Leave the front desk or nurse with contact information – If you must leave the clinic waiting area for any reason, leave the front desk assistant or your nurse with a way of reaching you, such as a cell phone number (in addition to the M. D. Anderson pager you may receive). This way someone can reach you quickly if you are needed back at the clinic.
9. Be aware of children sensitive to food in the clinic – If you bring food to the waiting area, please be considerate of patients who may be sensitive to food smells or other strong odors due to their chemotherapy causing nausea. This also applies for children fasting before a procedure.
10. Don’t hesitate to ask questions – You are a vital member of your child’s health care team, and you play an important role in enhancing your child’s experience at the hospital. If you are unsure about your upcoming schedule, or don’t know where to find a location for an appointment or have any other questions, don’t hesitate to ask. Your health care team, child life specialists and other staff in the clinic are there to partner with you to help make your day go as smoothly as possible.
Wednesday, August 01, 2012
What it means to take care of yourself, from one caregiver to another
By Cancerwise Blogger on June 18, 2012
By Genie Alice Causey
Nate Causey of Tupelo, Miss., was treated for TMJ and tension headaches before doctors found the real cause. At age 34, he was diagnosed with a central neurocytoma on May 7, 2010. Unexpected and rare complications left him with several disabilities, but with hard work and determination, Nate is beating the odds every day.
His wife, Genie Alice, wants to share her experiences as a caregiver to encourage others no matter where they are in the process of fighting cancer.
Caregivers --despite our differences --it seems there's one thing we all have in common: guilt.
Well-meaning friends, doctors and strangers always tell us the same things, "Take care of yourself."
It sounds like a great idea, right? But it's not always practical or realistic.
We feel guilty. Everyone tells us that doing these things will make us better caregivers. But whenever we take time for ourselves, we feel guilty that we aren't doing something else.
Early on in my caregiving journey lots of people told me how important it was for me to take a night off and go spend time with my friends. The problem was, when I actually did that I was so consumed with guilt and worry that it made my stress levels worse.
As a fellow caregiver, I want to share some simple, real ways that helped me learn what it means to "take care of myself." I'm no expert, but I've been there, and this is what has worked for me.
Nate Causey of Tupelo, Miss., was treated for TMJ and tension headaches before doctors found the real cause. At age 34, he was diagnosed with a central neurocytoma on May 7, 2010. Unexpected and rare complications left him with several disabilities, but with hard work and determination, Nate is beating the odds every day.
His wife, Genie Alice, wants to share her experiences as a caregiver to encourage others no matter where they are in the process of fighting cancer.
Caregivers --despite our differences --it seems there's one thing we all have in common: guilt.
Well-meaning friends, doctors and strangers always tell us the same things, "Take care of yourself."
It sounds like a great idea, right? But it's not always practical or realistic.
We feel guilty. Everyone tells us that doing these things will make us better caregivers. But whenever we take time for ourselves, we feel guilty that we aren't doing something else.
Early on in my caregiving journey lots of people told me how important it was for me to take a night off and go spend time with my friends. The problem was, when I actually did that I was so consumed with guilt and worry that it made my stress levels worse.
As a fellow caregiver, I want to share some simple, real ways that helped me learn what it means to "take care of myself." I'm no expert, but I've been there, and this is what has worked for me.
- Do what works for you. If taking a break to go meet friends makes you feel guilty or makes you worry yourself sick, then don't do it. I know everyone will tell you this is something you need to do. But if it makes you feel worse, then it's not worth it.
I'm to the point now that I can go out to dinner or stop to get a pedicure every now and then and can actually relax and enjoy it. However, I can't go somewhere overnight. I would worry so much about my husband that I couldn't enjoy myself.
Figure out what you feel comfortable with and do that. If it's only a five minute walk down your street, that's OK. It's not about what you are "supposed" to do. It's about what works for you.
- Don't neglect your friendships. This one is difficult, and I got lucky in this department. I have a small group of girlfriends that have been my rock. They've stuck by me through the times when I've been at my worst.
Don't have time for dinner? Take five minutes or less to check in every now and then.
- Keep yourself well. I've learned the hard way. If you let something go too long because you're too busy, it might knock you out of commission for weeks. At the first sign of an illness, I immediately call my doctor.
- Make a list. Some days, caregiving can feel so overwhelming that you feel like the weight of it is going to crush you. Every night before bed, I write a list of everything I need to get done. Then, I select the most important one. Getting everything out of my head and onto paper helps me sleep. By choosing just one thing that absolutely must be accomplished the next day, I can focus on what's most important and not be overwhelmed.
- Prioritize. Not on your to-do list, but in life. Then every decision you make will be much easier. When it's time to make a decision, instead of freaking out about it, I try to think about it in terms of top priority. Then, the answer usually becomes clear.
- Trust your medical team. When you are responsible for decision-making, it is so important to trust your doctors and medical team. I trust my husband's neurosurgeon, Jeffrey Weinberg, M.D., completely. If there's ever been a question of what to do, I always go with his opinion. I know he is brilliant and caring. Knowing we're in good hands gives me peace.
- Use the Internet cautiously. The Internet is wonderful. You can find awesome research studies on treatments and technology, as well as blogs and chat rooms about almost anything. I do an Internet search for anything we ever consider for my husband's treatment.
However, the Internet can't examine your loved one. It didn't go to medical school, and it can't talk to you. Use it to find information and educate yourself, but you ultimately need to rely on the experts.
- Learn all you can about your loved one's diagnosis. I ask a lot of questions, and the doctors always answer and are very patient with me. But when they answer, listen. Write down what they say. Keep a notebook with you all the time. You won't remember later, and they will appreciate you valuing their time by not asking the same questions multiple times.
- Let go of regret. After you've made a decision, don't look back. When I start to second-guess myself, I just say: "I made the best decision I could with the information I had." Then move on. There is absolutely nothing you can do about it now. Focus on the present -- not what might have been different.
- Do the best you can. On the days when I am just trying to keep my head above water and I feel like panicking, I've learned to say to myself, "You are doing the best you can." I know it's not the most inspirational or powerful thing, but it calms me. If you are trying your hardest and doing everything you can, then what more can you ask for?
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