What Cancer Cannot Do

As soon as I read ”What Cancer Cannot Do” I felt my inner cancer SURVIVOR come out.  We tend to give cancer a lot of power.  It is part of the process to start blaming changes in our lives, relationships, outlook, attitude and choices on cancer.  The real deal is that each one of us has the power and inner-strength to focus on what we CAN do and what cancer CANNOT do.  It is a powerful exercise. 

I started thinking about what else could be added to the list.  I’m sharing it with all of my blog readers and asking you to add to the list as well.  Here is my version:

Cancer is so limited…

It cannot turn my world to darkness.

It cannot make the beauty of nature disappear.

It cannot take over my being.

It cannot drain my creativity.

It cannot silence my voice.

It cannot prevent me from spreading awareness and hope.

It cannot come between my connection with a Higher Power.

It cannot stop me from laughing and smiling.

It cannot take my will power.

It cannot make me give up.

It cannot take away my joy.

It cannot change my purpose in life.

ABOUT THE AUTHOR: 
Jennifer Bridge is a thyroid cancer survivor and Life Coach.  Jennifer offers complimentary intro life coaching sessions via phone. For details on how to schedule your complimentary coaching call please contact her at freelifecoachingcall@jenniferbridge.com 

Chronic Illness: Dealing with the Day to Day Challenges

Illness can sneak into your life like a whisper of waves in the distance you barely hear, or hit you like an eathquake. Either way, you may suffer a gauntlet of pain, fear, frustration and isolation. In a country as robust as the United States, it's hard to believe that one in every three people has a chronic illness, but it's true. According to the National Centers for Disease Control and Prevention, These illnesses cause major problems in daily living for more than one in 10 Americans -- about 30 million people!

The biggest disabler is arthritis, followed by back pain. Five others --heart disease, cancer and/or it's treatment complications, stroke, chronic lung disease and diabetes -- account for more than two thirds of all U.S. deaths. Mental health illnesses, add a huge tool. The National Institute of Mental Health estimates that about one in five adults suffer from a diagnosable mental disorder in any given year such as  anxiety, depression and post traumatic stress disorders related to chronic illness and it's day to day challenges. 

Four of the 10 leading causes of disability are mental health disorders:  major  depression, bi-polar disorder, schizophrenia and obssesive compulsive disorder. Vast numbers of people go untreated, even though effective treatments are available. In this blog post I am sharing a few things that helped me through my private journey with chronic illness (mixed connective tissue disease, spinal chord injury and cancer) and it's sidekicks; anxiety, depression, post traumatic stress disorder. 

Mixed connective tissue disease is a difficult to diagnose auto-immune disorder. After 10 years of declining health, seemingly unrelated symptons, doctors, hospitals, diagnostic tests and specialist consultations I finally received my diagnos at age 35, but it took 6 years of searching to discover a combination of treatments that worked for me. And then on my 41st birthday I received the gift of cancer!

The past 7 years have been a whirlwind of doctors, hospitals and medical drama, not only was I diagnosed with a chronic illness and a potentially deadly disease, my then teenage son (a star athlete and honor roll student) suffered a traumatic brain injury, my father was diagnosed with stage IV leiomyosarcoma (we provided hospice care at home for him), my childrens' father was diagnosed with stage IV esophageal cancer and my daughter was diagnosed with stage II thyroid cancer a few weeks after her 21st birthday and days after one of my major surgeries.

Most of that time,  I was unable to work,  spent most of my time in bed and disabled, plundering away my life savings on healthcare costs and, as a single mother, supporting my children through their own healthcare crisis journey.  Not exactly the most ideal circumstances for the necessary rest and relaxation we all hear about is essential for recovery and peace of mind. Yet I endured, recovered and here I am! Whatever your own situation, you can help yourself feel empowered, serene and hopeful about the future.

DO SOME HOMEWORK

Even if doctors could know everything that you should know about your illness, they would never, ever have the time to tell you. Doctors work in an increasingly complex medical system that often pressures them with conflicting demands and ever increasing regulations and paperwork. Patients on the other hand, can get health information more quickly (and cheaply) than ever before.

Thanks to the internet, anyone today can get excellent, easy to understand and up to date material about practically any health problem. Unfortunately, many of the sickest people - particularly the elderly, the poor and members of some minorities - are least likely to have computer skills and internet access.  If you are one of these people (or you know someone facing a chronic health challenge) you don't have to be shut out. Ask for (or give) a helping hand.

Any religious congregation with a youth group is likely to have computer savvy teens who would be happy to make a few dollars or volunteer an hour or two to do some simple internet searches and print out results for you.  Or you might find a college student  by posting a notice on a campus bulletin board. You could also try calling social service agencies or public libraries. Commercial internet booksellers  are also searchable by topic and can be invaluable in identifying and obtaining the latest books, audiotapes, and videos  by professionals and patients. Many used books are for sale at discount prices or are available at your local library.

CULTIVATE YOUR SPIRITUALITY

Illness, like rain,  falls on people in every possible spiritual state. Revitalizing  your spirit and deepening your spiritual life may be the door to becoming whole and well. It really made a difference in my personal journey. f you are active in a religious community, it may have a special healing ministry or literature. If you're too sick to seek it out or participate, ask for help or set a goal to get yourself well enough to show up. And don't underestimate the power of simply telling God that you hurt, you're afraid and you need His help. It can be one of the most effective prayers you ever make.

In the Christian faith, the healing ministry of Jesus communicates clearly the desire of God for people to be well. Yet Jesus' willingness to die and His resurrection dramatize that life on earth is not the ultimate goal or the greatest gift of His love.  None of us is here to stay. If illness is threatening your life (as it did mine and the lives of those I love most),  you believe you will always be sick or you know factually you will be (as is the case with certain illnesses) spiritual renewal can give your days meaning when otherwise they migh have none.

LEVEL WITH YOURSELF

When I learned that I had mixed connective tissue disease, I also learned that most experts in this condition recommend some form of daily exercise, indirect sunlight 15-30 minutes a day and lots of vitamins (particularly B12, Folic Acid and C-Complex). With increasing difficulty breathing, excruciating  muscle pain, joint sweeling and extreme fatigue the prospect of daily exercise seemed daunting but I resolved to do what needed to be done and enrolled at the local YMWCA for a "senior" Aqua Exercise Class made some new friends and began driving a group of my "young at heart" friends to Garrett Mountain twice a week for nature walks! 

Once I was diagnosed with cancer and began treatment  "brain fog", a common side effect and sometimes long term complicaton of chemotherapy, in which the mind always feels desperately tired and thoughts are perpetually gauzy, had become a daily problem  the idea of driving to the YMWCA for aqua exercises or anywhere for that matter  was a scary and dangerous proposition. The solution? My son bought me a puppy! At first I was worried about the care demands of this animal, but soon Mr. Max Schanuzer became a beloved family member and daily walks with him around our neighborhood my window to renewed energy and life!

It wasn't always pretty, sometimes I must have looked like a scare crow: pale, skynny or swollen depending on the day, week or month of treatment, no hair or "duckling-peach-fuzz", frail, slow or limping, many, many  times ridiculously dressed for the weather (either too cold or too hot not necessarily following the seasons) but always and forever grateful for my happy go lucky dog, walking me around, making me laugh and motivating me to go on and participate in life through exercise. It was something neither mixed connective tissue disease or cancer would not take from me and better than sitting in front of the couch, watching TV and everything I could "not" do.

Dogs aren't for everyone but if you take a matter of fact, unashamed look at your habits, it will be easier to stay open to the idea of changing them for the better, even if you've tried and failed in the past. We put ourselves in harm's way by our personal behaviours and habits such as, smoking, overeating, drinking too much alchohol or caffeine, exercising too little or not at all and undergoing too much "stress by choice".

If your body is ill, it is in crisis!  Changes you make, changes you can make, may help it more than anything a doctor does. New approaches to making personal changes in our lives, whatever they need to be for us individually and new avenues for getting emotional, psychological and financial support emerge continually. One may help you. Never give up your search. Hope matters!

LAUGH!

What feels better than laughing? The potent medicine of laughter wins praise in quarters as varied as the Holy Bible and the Journal of the American Medical Association. Doctors  were writing about the benefits of laughter more than a century ago! But it took magazine editor Norman Cousins to put laughter on the popular medical map. In his 1979 book Anatomy of an Illness as Perceived by the Patient, Cousins described his recovery from a serious illnesswith humor's help. He had discovered that ten minutes of belly laughter gave him two hours of pain free sleep!

The practical value of laughter became a major feature of his treatment and why not? I can personally attest to how much the silly little antics of my beloved dog helped me through the darkest of days both emotionally and physically when recovering from major intra-abdominal surgery (pelvic reconstruction) the physical pain was non responsive to pain medication and the only choice I was given was a morphine pump. I refused the morphine pump and I know I made it through those dark days with laughter, courtesy of Mr. Max Schnauzer. Today getting patients to laugh is part of medical programs ranging from pediatric wards to hospices.

FIND SOME HEROES

Human history shines with individuals who have prevailed through awful illnesses. From the 16th Century Spanish mystic Teresa of Avila to modern day British physicist Stephen Hawking, people have managed astonishing achievements despite severe illness and/or dissability. I found supreme inspiraton in Christopher Reeves, the handsome actor best known for his role in the Superman movies. Reeve's fall from a horse during a 1995 riding competition broke his neck and paralyzed him. It did not, however, impair his courage, initiative  or creativity.

Christopher Reeves started a foundation to fund research into spinal chord injuries, and traveled the world to promote the cause. He continued to write, direct and even act! He authoted books about his life and won a Grammy award for recording one of them. He remained a caring, husband and father with a loving wife and three children by his side to care for. He did all this while in a wheelchair and on a ventilator, paralyzed!

Many chronic illnesses, especially mental and emotional ones, still carry a stigma, no matter what that illness may be or why it affects you or someone you love. Anxiety, depression and post traumatic stress disorder after diagnosis, during treatment or as a survivor of a life altering, life threatening medical condition is very common. No matter what, you deserve non-judgmental support from healthcare providers, family, friends and colleagues. You may have to help them up a learning curve. But you should not put up with being ashamed and should never shame yourself for your illness and emotional and psychological complications of living with a chronic health condition.

Life is full of journeys that we don't plan, and even the difficult ones have a high road worth seeking. Don't get discouraged if you take the wrong turn every now and then. Bad experiences are part of life as well as good ones. And resist any efforts to hurry or pressure you into making health care decisions, even if they seem urgent at the time. Remember that YOU lead your personal journey, at your pace, one step at a time.

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Accomodating Employees with Cancer

The Americans with Dissabilities Act   requires private employers with  fifteen (15) employees or more employees as well as state and local government employers to provide adjustments or modifications to enable people with disabilities to enjoy, without discrimination  equal employment opportunities, unless doing so would be an undue hardship.

An employer must provide a reasonable accomodation tha is needed because the limitation caused by the cancer itself, the side effects of medication or treatment for the cancer, or both. For example, an employer my have to accomodat an employee who is unable to work while he or she is undergoing chemotherapy or who has depression as a result of cancer, the treatment for it, or both. An employer, however, has no obligation to monitor an employee's medical treatment  to ensure that he or she is receiving appropriate medical care (i.e. treatment).

Some employees with cancer may need one or more of the following accomodations:

• leave for doctor's appointments and/or to seek medical care or recuperate from treatment.
• periodic breaks or a private area to rest or to take medications.
• adjustments to work schedule and break time.
• permisson to work from home when possible.
• modification of office / work area temperature.
• permission to use work telephone to call doctors.
• reallocation or redistribution of marginal tasks to another employee and / or
• reassignment to another job.

Some employees with cancer may need accomodations other than the ones listed above. The employer, therfore, should discuss with the employee his or her particular limitations and whether there is anything the employer can to enable him or her to work. For example, an employer might explore the possibility of providing certain equipment, a temporary transfer to another department or changes in how work is performed.

There are "no magic" words that a person has to use when requesting a reasonable accomodation. A person simply has to tell the employer that he or she needs an adjustment or change at work because of his or her cancer. A request for reasonable accomodations also can come from a family member, friend, healthcare professional or other representative on the employee's behalf.

An employer may request reasonable documentation where a disability or the need for reasonable accomodations is not obvious. An employer, however, is entitled only to documentation sufficient to establish that the employee's cancer is a disability and that explains whe an accomondation is needed. A request for an employee's entire medical record, for example, would be innapropriate, as it likely would include information about conditions other than the employee's cancer.

An employer does not have to grant every request for a reasonable accomodation. It does not have to provide an accomodation that would result in "undue to hardship" to his business or workplace. Undue hardship means that providing the reasonable accomodation would result in significant difficulty or expense. However, if a requested accomodation is too difficult or expensive, an employer should determine whether there is another/alternative easier, less costly accomodation  that would meet the employee's needs.

An employer is not required to provide reasonable accommodations that an individual wants but, rather, may choose among reasonable accomodation options as long as the chosen accomodation is effective. In any case an employer may be required to provide more than one accomodation for the same employee with cancer. The duty to provide a reasonable accomodation is an ongoing one. For example:

• an employee with cancer may require leave for surgery and subsecuent recovery but may be able to return to work on a part-time or modified schedule while receiving chemotherapy.

An employer must consider each request for a reasonable accomodation and determine whether it would be effective and whether providing it would pose an undue hardship. An employer never has to reallocate essential functions as a reasonable accomodation but can do so if he wishes or needs to for the effective performance of his business.

An employer may not automatically deny a request for leave from someone with cancer because the employee cannot specify an exact date of return. Granting leave to an employee who is unable to provide a fixed date of return may  be a reasonable accomodation under the ADA. Although many types of cancer can be successfully treated - and often cured - the treatment and severity of side effects often are unpredicatable and do not permit exact timetables or accurate calculations.

An employee requesting leave because of cancer, therefore, may be able to provide only an approximate date of return. In such situation, or in situations in which a return date must be postpone because of unforeseen medical developments, employees (or their representatives)  should stay in regular communication with their employers to inform them of their progress and discuss the need for continued leave beyond what  originally was granted.

The employer also has the right to require that the employee provide periodic updates on his or her condition and possible date of return. After receiving these updates, the employer may re-evaluate whether continued leave constitutes and undue hardship to his business.

For more information or guidance regarding workplace accomodations for cancer patients please visit the Cancer Legal Resource Center  or call

• Toll Free #: (866) THE-CLRC or (866) 843-2572
• TDD: (213) 736-8310 
• Fax: (213) 736-1428
• Email: CLRC@LLS.edu

  

How to Contact the Telephone Assistance Line


Call 866-843-2572 (Monday-Friday, 9AM-5PM Pacific). If you reach their voicemail during business hours, they are assisting other callers. However, they now have an intake form available online. The intake form asks for information about the issue with which you would like assistance. Please consider filling out an intake form and email, fax, or mail it back to them, this will help them assist you in a timely manner.

Click here to complete the intake form online now!

Click here to download the intake form to mail or fax it!

That Dirty Word: FATIGUE

Fatigue is the most common side effect of cancer treatment. It is associated with treatments such as chemotherapy, radiation, biotherapy, surgery and cancer itself.  Fatigue experienced as a side effect of cancer treatment is not necessarily linked to exertion or activity, not completely relieved by rest, and more severe than fatigue of everyday life.

There are different patters of fatigue depending on the type of treatment a peson is receiving. People undergoing radiation treatment notice that fatigue increases over time, seems to be worse in the evening and is usually the worst at the end of treatment. Most people return to their pre-treatment activity level within three to twelve weeks, but for some it may take up to a year.

Thyroid cancer patients and survivors who have undergone thyroidectomy may experience a continual level of fatigue during their lifetime related to difficulties processing synthetic hormones or adjusting the optimal dosage for to their needs.

For people undergoing chemotherapy, the fatigue peaks right after treatment. These people will also notice that their fatigue is worse when their blood counts are at the lowest point. Some individuals received both radiation and chemotherapy at the same time, this increases the fatigue they experience.

Fatigue's impact can be felt physically, cognitively and emotionally. It means having less energy to do the things you do or want to do. Completing daily activities at home or work becomes more difficult. I can best describe cancer fatigue as having the lowest energy level with  arms and feet that feel like they weight a million pounds. Just gettin up and out of bed in the morning was nearly impossible for a little while.

Cancer related fatigue decreases your ability to concentrate or attention span, levels of alertness, comprehension, cognition and memory. Doing simple math like balancing the checkbook became a challenge. Making phone calls virtually impossible. Emotionally I found myself impatient, irritable and unmotivated regardless of how important something was.

Besided the actual cancer treatment there are several causes for extreme fatigue. These include emotional distress, sleep disturbances, medication, nutrition,  anemia (low red blood cell count), pain and other health conditions. Therefore more than just one cause may be contributing to the experience of fatigue during and after cancer treatment.

Your healthcare team will make every effort to rule out any condition that can be treated to improve your fatigue. Unfortunately often the exact cause cannot be found.  One of the best ways to manage cancer related fatigue is to keep a diary with daily fatigue ratings to monitor patterns of fatigue over time. 

Track when fatigue occurs and rate it from 0 (no fatigue) to 10 (you cannot get out of bed). Most people will begin to notice a pattern and be able to plan and do activities that are important to them when they are the least tired. The last 3 or 4 months of my biotherapy I knew I had to take a nap mid-morning and mid-afternoon if I wanted to be clear and present for my children during lunch and dinner.

Research has shown that exercise relieves fatigue. Walking daily will improve fatigue and emotional wellbeing greatly. It prevents muscles from weakening due to lack of use!  I thank God everyday for my dog, Mr. Max Schnauzer who I walk 3 times a day, rain or shine and who kept me motivated to walk even on days when I thought I couldn't even sit up.  Many mornings I made myself get up and get going for our morning walk and found that once we started walking I did feel better.

Mr. Max Schnauzer is a very special dog and he seems to sense when our daily routine is a bit much for me. He has been known to sit down near a bench so I can rest or simply turn around and take me home after only a few minutes. I owe a great deal of my fatigue fighting strategy success to my four legged little friend.

If weather is an issue or if you prefe peoples company over a furry creature many malls open early for walkers, so you do not have to worry about  bad weather, too high or too low temperatures. Always check with your healthcare team before beginning a walking program and listen to your body, if you are over doing it your body will let you know.

Another interesting fatigue fighting do is sitting down to complete tasks. When showering use a bath chair. Sorting and folding clothes can also be done sitting down. Sit at the kitchen table to cut and dice foor or mix ingredients. I used a counter height chair or bar stool many times to iron clothes and even do the dishes!

If you have little ones don't underestimate the fun and entertainment value of board games and reading books. Let them help you with putting on your socks and shoes, picking up toys, getting mail from the mailbox, making breakfast (fruit, toaster oven waffles or cold cereal) even lunch (PBJ's or TV dinners) and even taking out the garbage (I kept smaller trash cans around so the bags would not become too heavy for them).

Give yourself permission to accept help, delegate tasks and simply let go. You are more important than things or a picture perfect home. Have someone carry your groceries to the car. Let family and friends assist with meal preparations or household chores it's ok if you just sit down and read a good book or listen to music while others take care of the rest.

Establish and maintain a regular bedtime/wake time routine to ensure a good night's sleep. Avoid heavy meals, caffeine, alcohol or nicotine right before bedtime. Take a power nap for 30 minutes if you are tired during the day and remember to use an alarm to wake you. Do not let long daytime naps disrupt your nightime sleeping.

Uncontrolled pain can contribute to fatigue. It can disrupt sleep at night. Sometimes, the pain medication itself can cause fatigue or sleepiness. There is a fine line in adjusting pain medication so that you are pain free without being too drowsy. It's important that you communicate with your healthcare provider about your pain.

Maintain a balanced diet that includes plenty of protein for energy, fluids to maintain hydration, vegetables and fruit for vitamins and minerals. Often, people will not feel like eating large meals during treatment. I didn't so I made myself "graze" on smaller healthy meals and snacks throughout the day making sure that I had "something" to eat or drink with my family during their regular meal time.

Fatigue is one of the most debilitating symptons for people undergoing cancer treatment. And many times is a long term problem for survivors after treatment. Knowing that fatigue is a common side effect of the cancer experience and that there are ways to manage it can enhance a person's confidence and overall physcological well-being.

Remember it is always very important to communicate with your healthcare team about how fatigue is affecting your life. Fatigue helped me learn how to prioritize, delegate, let go and enjoy the little things in life. It was a lesson I needed to learn and I am glad I did.

Finding Help for Cancer Treatment Transportation

Many cancer patients have trouble traveling to and from their cancer treatment   because chemotherapy or radiation side effects and complications makes them too weak.

Transportation services are available in many communities and, although the vary, are usually one of these three types:

• Low Cost van services run by community agencies and some hospitals

• Volunteer transportation services (where someone will drive you in their car) run by local religious groups and nonprofits.

• Private transportation services (car services and taxis) the cost of which may be covered by some nonprofits, religious groups or insurance companies.

Tips to Find Help with Transportation

• Start with family and friends ~ often they want to help out and this is something concrete they can take turns doing.

• Check with your hospital ~ to see if they have a van service for people coming as outpatients (not admitted to the hospital) for radiation or chemotherapy. Or check to see if you can to arrange to carpool with other other patients.

• Contact your local  social services government office to see if they provide free or low cost transportation on a public transit system for elderly or disabled individuals (sometimes called "paratransit").

• Check with your community agencies, like the YMCA, the YWCA, Catholic Charities, Area Agency on Aging, United Way, fraternal orders or local churches.

• Paying for public transportation (taxis, ambulettes and car services) may be your only option. This can be expensive, so don't hesitate to shop around.  I was able to speak to a supervisor and his manager and after explaining my situation they agreed to a discount rate for regular use.

About The Author: Wilma Ariza is the Founder and Development Director of Stevie JoEllie's Cancer Care Fund a Project of United Charitable Programs Inc., a 501(c)(3) Public Charity Tax ID 20-4286082 Progam 102442. In 2008 her daughter Stevie JoEllie was diagnosed with State II Follicular Thyroid Cancer a few weeks after her 21st Birthday and has "survived" two thyroid cancer recurrences. Learn More About Wilma

Finding Financial Assistance for Cancer Patients

Cancer Can be a tremendous financial burden on a patient as well as on a family. Besides hospital bills, cancer treatment includes many expenses insurance often doesn't cover, such as necessary transportation and child care. If the person with cancer or caregiver has to stop working, the financial crisis becomes greater. Some relief is available, but it will take effort to piece together what is available to you according to your needs and the specific qualification criteria.

Here are some general tips for finding assistance:

Understand what assistance you are entitled to under the law (these programs are called entitlements). A hospital or community social worker can direct you to the proper government agency. Most entitlement programs take time to process yoru enrollment application forms. The sooner you request information and send in your application, the sooner you will receive assistance.

Take time to review your health insurance policy, as well as any other insurance policies you may have, to better understand your coverage. Ask your insurance company if they can assign you a case manager to help you and answer you questions.

If you need help with hospital expenses, not covered by insurance or copays you no longer can afford ask to speak with a financial counselor in the business office of the hospital who can help you develop a monthly payment plan, process a co-payment waiver for you or a charity care application.

If you expect to run out of money or already have and cannot meet your daily living expenses like rent and food talk directly to your creditors and explain your situation. Many utility and mortgage companies for example will work out a payment plan wih you before a crisis develops.

Don't forget about the power of using your local elected officials. They often have resources and connections that can be useful. If you are having difficulty with Medicaid, calling the office of your state representative might help; for Medicare problems, your federal representative or senator's office may have information and assistance.

To find out who your elected officials are and how to contact them, contact Project Vote Smart at www.vote-smart.org or call the agency toll free 888.868.3762

About The Author: Wilma Ariza is the Founder and Development Director of Stevie JoEllie's Cancer Care Fund a Project of United Charitable Programs Inc., a 501(c)(3) Public Charity Tax ID 20-4286082 Progam 102442. In 2008 her daughter Stevie JoEllie was diagnosed with State II Follicular Thyroid Cancer a few weeks after her 21st Birthday and has "survived" two thyroid cancer recurrences. 

Getting the Most from A Service: What to Ask.

Sometimes it is more important to know the right questions to ask rather than to know the right answer.

Before you call an organization for information, or to find out if it provides the service you need, it is important to know which questions you are going to ask. Therefore, it is a good idea to:

Write out your questions beforehand.

• Keep a pen and pad on hand as you speak to someone in person or on the phone to take notes.

Always ask with whom you are speaking, so if you have follow up questiosns you can contact them again.

Once you have found a group or organization that can help you I suggest you ask the following questions which can help you get the most from what they have to offer.

1. How do I apply for [this service or assistance]?
2. Are there eligibility requirements ? What are they?
3. Is there an application process? How long will it take?
4. What information will I need to complete the application process?
5. Will I need anything else to get the service or assistance I am requesting?
6. Do you have any other suggestions or ideas about where I can find help?

These questions will help you be prepared, feel more secure about discussing your needs, and get the most out of the resources that are available to you or your loved one.

About The Author: Wilma Ariza is the Founder and Development Director of Stevie JoEllie's Cancer Care Fund a Project of United Charitable Programs Inc., a 501(c)(3) Public Charity Tax ID 20-4286082 Progam 102442. In 2008 her daughter Stevie JoEllie was diagnosed with State II Follicular Thyroid Cancer a few weeks after her 21st Birthday and has "survived" two thyroid cancer recurrences. 

Cancer Warrior: Fighting Back & Getting Organized

After a cancer diagnosis, many people find that becoming well-organized helps them gain a sense of control over all the information they receive, including financial information. To do this, first steps include finding out who best will answer the specific questions you have and setting up a personal organizational system. 

The following suggestions may help you organize your cancer care paperwork:

• Find the filing system that works for you. A filing cabinet or simple desktop divider with individual folders keeps key information all in one place and makes it quick and easy to find. File new information as soon as possible, so it doesn't get misplaced. Your files may include notes made during doctor appointments, copies of your laboratory test results, your personal insurance information, and contact information for your doctor’s office, medical center, insurance company, support organizations, and others.
  
  
• Ask your health insurance company if you can be assigned a case manager, so you can talk with the same person each time you need to call. Also, maintain a written record of any conversations with all insurance company representatives, including the date, name of the person you spoke with, and what was said. Put the newest records at the front of your file, so you have a clear and up-to-date list of these discussions.
  
  
• Keep current copies of all insurance policies and refer to them by name and number in any communications about insurance coverage.
  
  
• Write down the list of questions that are most important to you, using the suggestions in this booklet or others. Start with your most important questions to make sure these are answered first.
  
  
• Try to decide ahead of time how to adjust your budget to deal with any loss of income resulting from less time at work, or expenses that are not covered by insurance.
  
  
• List each task you need to accomplish between doctor appointments, and put a check mark beside each one when you complete it to mark your progress.
  
  
• Ask a friend or family member to help you keep track of your regular monthly bills, or consider using a bill-paying service to help keep your payments on time.

Healthcare Reform & You

In March 2010, the Patient Protection and Affordable Care Act – often called simply Health Reform – was signed into law, changing several rules regarding health care insurance coverage in the United States. For people with cancer, this new law covers areas regarding both the cost of and access to care. Some changes took effect immediately, and others will take effect in the coming years. 

Highlights of the new law are summarized below and are adapted from information from the Kaiser Family Foundation, unless otherwise noted. This list is not intended to be a complete outline, but rather is meant to provide an overview of major areas of health reform relating to the cost of and access to cancer care. More details can be found at the federal government’s website of www.HealthCare.gov.

How Does Health Reform Help You Now?

General Insurance Reform

• Private health plans are not allowed to place a lifetime limit (called a cap) on the dollar value of a person’s coverage. Subject to certain restrictions, insurers are permitted to place an annual limit on the dollar value of coverage until January 1, 2014, but will not be permitted to enforce annual limits after that date.

• Insurers cannot take away coverage except in cases of fraud. Previously, insurance companies could revoke coverage for an error or technical mistake in a patient’s insurance application. This practice is now illegal.

• Insurance plans that offer dependent coverage are now required to make coverage available to adult children up to age 26 (although certain “grandfathered” group health plans may exclude such coverage if the adult child is eligible to enroll in a health plan through his or her own employer).

• Dependent children under age 19 cannot be denied coverage for pre-existing conditions.

For People Without Health Insurance

• Uninsured individuals with pre-existing medical conditions now have access to a temporary national high-risk insurance pool program. U.S. citizens and legal immigrants who have been uninsured for at least six months are able to enroll for coverage through this high-risk pool and receive subsidized premiums. (Effective until January 1, 2014.)

• States must establish a website to help residents identify coverage options in a standardized format. This includes the federal government’s HealthCare.gov website, which provides information on the new law and insurance options for consumers.

Elimination of Co-pays for Preventive Services

Cancer prevention and risk-reduction strategies can lower the physical, emotional, and financial burden of cancer and improve the overall health of cancer survivors, including reducing the risk of the cancer coming back or the chance of a second cancer. The new law includes several provisions to increase access to cancer prevention services:

• Private health insurance plans issued after September 23, 2010, are required to eliminate co-pays for preventive services recommended by the U.S. Preventive Services Task Force (USPSTF; www.uspreventiveservicestaskforce.org) including but not limited to:
  
  
1. Screening tests for colon cancer for adults over 50.
2. Annual mammograms for women over 40. Other services to prevent breast cancer will also be covered, including a referral to genetic counseling and a discussion of chemoprevention for certain women at increased risk.
3. Regular Pap tests to screen for cervical cancer and coverage for the HPV vaccine, which can prevent cervical cancer.
4. Tobacco cessation interventions, such as counseling or medication to help individuals quit smoking.

• Co-pays for Medicare-covered preventive services recommended by the USPSTF have been eliminated. The Medicare deductible for colorectal cancer screening tests have also been eliminated. Both changes were effective January 1, 2011.

How Will Health Reform Help You in the Future?

General Insurance Reform

• Adults cannot be denied coverage for pre-existing conditions. (Effective January 1, 2014.)
• Waiting periods for coverage greater than 90 days will be eliminated by January 1, 2014.

For People Without Health Insurance

• Most U.S. citizens and legal residents will be required to have health insurance beginning in 2014. Exemptions can be granted for financial hardship, religious objections, American Indians, those without coverage for less than three months, undocumented immigrants, people in jail, people for whom the lowest cost plan option exceeds 8% of an individual’s income, and those with incomes below the tax filing threshold. (In 2009, the threshold for taxpayers under age 65 was $9,350 for singles and $18,700 for couples.) Penalties for not having health insurance will be phased in beginning in 2014.

• Medicaid coverage will be expanded to individuals with incomes up to 133% of the federal poverty level who are under 65 and who are not otherwise eligible for Medicare. (The poverty level was $18,310 for a family of three in 2009.) (Effective January 1, 2014.)

• State-based health insurance exchanges will be established to help people and small businesses with the purchase of coverage. Premium and cost-sharing credits will be available to individuals and families earning up to 400% of the federal poverty level. The Office of Personnel Management, a federal government agency, will begin contracts with health insurance providers to offer at least two multi-state plans in each exchange. (Effective January 1, 2014.)

Elimination of Co-Pays for Preventive Services

• Co-pays for Medicaid-covered preventive services recommended by the USPSTF will be eliminated, effective January 1, 2013.

For Individuals Participating in Clinical Trials

• As of January 1, 2014, insurers will not be allowed to limit or drop coverage to an individual choosing to participate in a clinical trial. This applies to clinical trials to treat cancer, in addition to other life-threatening diseases.

Medical Insurance Doesn't Cover All Expenses

Many families face the difficult challenge of paying for the medical claim portion or bill  that  the medical insurance does not cover.  Some medical insurance policies only cover 50% of the cost of medications and treatments.  Others cover as much as 70% or 80% of the cost.  That still leaves a substantial portion of medical care costs for thyroid cancer treatements and llfe long follow up  that many thyroid cancer patients and survivors  just cannot afford.  Most of us will agree that 30% of a $100,000 medical bill is pretty hard for the average low or middle income family  to handle.  In fact, hundreds of families in the United States face medical bankruptcy everyday!  This is unconscionable -and we must do something to help!

In addition, not all medical insurance policies cover the same costs or even recognize as “usual, customary and reasonable” the same treatment for thyroid cancer and follow up care.  Not all medical insurance is the same.  For instance, if a patient is diagnosed with Thyroid Cancer today, depending on their insurance carrier, some patients are told that after having the thyroid removed they should have radioactive iodine treatment to “kill” or destroy any remaining cancer cells. Other medical insurance carriers consider this “standard” practice tell  “optional” –and therefore do not “cover” it.

Most doctors agree  that “radioactive iodine ablation” treatment increases the odds that thyroid  cancer will not recur for  thyroid Cancer patients diagnosed with stage II papillary thyroid cancer and beyond as well as follicular “variant” papillary thyroid cancer at any stage and well differentiated follicular thyroid cancer.

Additionally almost 50% of all thyroid cancer patients do not have Thyrogen One Injections in preparation for,  and  prior to their radio-active ablation treatment, either because that option is not discussed with then by “medical” providers that have to “fight” medical  insurance companies to cover this medication as a medically necessary or because the medical insurance carrier does not cover the injections and they simply  cannot  afford the $5,000 plus out of pocket cost for a series of three injections.

Stevie JoEllie’s Cancer Care Fund is working to develop an access to care grant program for thyroid cancer patients and survivors dedicated to helping bridge the financial  gap between out of pocket costs health care costs (insurance policy deductibles and co-pays and “left-over” balances), thyroid cancer  treatment and survivor follow up so that  thyroid cancer patients and survivors that are denied critical coverage such as this might be able to pay for the option that could mean the difference between life or death.

But we can’t do it alone, we need your help. If you can help financially, it would be greatly appreciated. A donation of any amount is needed. Donations are tax deductible under IRC Section 170 and all donations in excess of $250 will be provided a proof of donation letter. Donating to Stevie JoEllie’s Cancer Care Fund  will make a huge difference in somebody’s life and their family’s life.

Your support is greatly needed.

Stevie JoEllie's Cancer Care Fund is a project of United Charitable Programs Inc., a 501(c) 3 Public Charity.   Donations are tax deductible as allowed by law and all funds raised by Stevie JoEllie's Cancer Care Fund are received by United Charitable Programs and become the sole property of UCP, which, for internal operating purposes, allocates the funds to the Project (SJCCFThyNet). The Program (SJCCFThyNet) Manager makes recommendations for disbursements which are reviewed by UCP for approval.

One time and recurring donations 
are fast and easy to set up.

THANK YOU!!!!

Cancer Care Costs: Questions to Ask

Bringing up your financial concerns to others is difficult — especially if you don’t know what to say, or who to ask. It's not always clear who the best person is to answer your questions, so talking with your doctor is a good start. Try starting the talk by saying: “I am worried about costs related to my cancer treatment. Can we talk about my concerns?”

Your doctor may not have all of the answers to your financial questions, but can give you resources to help you get the best possible information. Several people and groups will help you find answers, including doctors and their support staff, nurses, social workers, case managers, patient advocacy organizations, and your employer’s human resources department. And, people from your insurance company can help on questions about your specific health care coverage.

Next, use the questions below to help focus the discussion. You don’t need to ask all of these questions – just choose the ones most important to your diagnosis and your financial situation.

Select the ones you are most concerned about, and ask those first. If you think the doctor is the best person to answer your questions, let the doctor’s office know ahead of time that you have some questions that you’d like to ask the doctor during your appointment, so enough time can be scheduled. Be sure to write down the answers so you can go back to your notes later. And, remember: these talks between you and your health care team will continue during your care.

Insurance Coverage and Medical Bills

• Who handles concerns and questions about health insurance in this office or medical center?
• Will this person help me work with my health insurance company/provider?
• Will this person help me figure out my medical bills and the codes on the bills to make sure they are correct?
• If an insurance claim is denied, who can help me file an appeal?
• Is there a limit to how much my insurance will cover for my treatment? If so, are my medical bills likely to reach that amount?
• I already have health insurance. What does the health reform law mean for me?
• I don’t have health insurance. What does the health reform law mean for me?
• Where can I find help in organizing my expenses, so I can keep track of incoming bills and plan my budget?

Doctor Appointments

• How much is my co-pay for each doctor visit?
• When is this payment due?
• If I need multiple visits to a doctor’s office, is there a policy where I can pay the co-pay only once or not at all (called a waiver)?
• Do you offer any payment plans?
• Will I be billed separately for laboratory tests, such as blood tests? Are they covered under my health insurance?
• Does my insurance cover other doctor visits, such as for a second opinion?

Cancer Treatment Costs: General

• Who can help me estimate the total cost of the recommended treatment plan?
• If I cannot afford this treatment plan, can we consider other treatment options that don’t cost as much?
• Does my health insurance company need to approve any or all of the treatment plan before I begin treatment?
• Do you have any financial conflicts-of-interest in recommending this plan for me?
• Is the treatment facility you are recommending in my health plan’s network?
• If I need to be admitted into the hospital, what is covered under my health insurance?
• If I receive treatment as an outpatient, what is covered under my health insurance?
• Are there ways to change my treatment schedule, if necessary, to work around my job or child care?
• Will there be a co-pay for each individual treatment?
• Where can I get low-cost or free counseling or support to help me cope with my diagnosis?

Cancer Treatment Costs: Clinical Trials

• What expenses will I have if I join a clinical trial?
• How do the costs of the clinical trial compare with the costs of the standard treatment? Does one cost more than another?
• Can I be reimbursed for any of the costs of the clinical trial?

Medication Costs

• What is my prescription co-pay for this drug?
• Is this prescription a one-time cost, or will it be an ongoing expense?
• Is this medication on my health insurance plan’s preferred drug list?
• Can I switch to a less expensive brand-name drug within the same drug class?
• Is there a generic drug available that will have the same effect? Is it less expensive?
• Can we regularly go over my list of medications, to see if there are ways to lower my drug costs?
• For medications for side effects, is there an over-the-counter medicine that has the same effect as the prescribed drug? Is it less expensive?
• Are there programs that can help cover the costs of my drug(s) for cancer treatment or side effects?

Associated Expenses: Transportation

• Is there free or low-cost transportation for patients at the medical center where I will have treatment?
• Are there reduced parking rates for patients at the medical center or doctor’s office?
• Is there an organization that can help me pay for transportation to and from treatments and medical appointments?
• If I am traveling a long distance, are there free or reduced-cost hotels or lodging near the treatment facility?

Associated Expenses: Family and Living Expenses

• If I have trouble paying for basic items, like food or heat, due to the cost of my cancer treatment, are there organizations that can help me?
• Where can I get low-cost or free child or elder care during my treatment?
• Where can I get free or low-cost personal items, such as a wig, if needed?
• Is there an organization that can provide low-cost or free counseling or support to my family?

Associated Expenses: Caregiving, At-Home Care, and Long-Term Care

• Are there ways to change my treatment schedule, if necessary, to work around my caregiver’s job and schedule?
• Could we talk about costs of care if I don’t have a family member or friend to go with me to appointments or care for me at home?
• Are there local organizations that can give low-cost or free home care or other services?
• Should I plan financially for long-term medical care, such as a nursing home or hospice care?

Associated Expenses: Employment, Legal, and Financial Issues

• Who can I talk with if I’ve lost income because of my cancer?
• If I have on-the-job difficulties related to my cancer, who can help me understand my legal rights?
• If my caregiver has difficulties at his or her job because of my cancer, who can help us understand our legal rights?
• Where can I find out if my medical and related expenses can be deducted from federal income taxes?
• Where can I get low-cost or free help with estate planning and legal issues, such as writing my will or granting a power of attorney?

************************

Stevie JoEllie's Cancer Care Fund is working to develop an access to care grant program for thyroid cancer patients and survivors nationwide. Your financial support is greatly needed. 

Stevie JoEllie's Cancer Care Fund is a project of United Charitable Programs Inc., a 501(c) 3 Public Charity.   Donations are tax deductible as allowed by law and all funds raised by Stevie JoEllie's Cancer Care Fund are received by United Charitable Programs and become the sole property of UCP, which, for internal operating purposes, allocates the funds to the Project (SJCCFThyNet). The Program (SJCCFThyNet) Manager makes recommendations for disbursements which are reviewed by UCP for approval.

One time and recurring donations 
are fast and easy to set up.

THANK YOU!!!!