How to Get a Better Night’s Sleep During and After Cancer Treatment

Sleeping well during and after cancer treatment can be a challenge. Cancer patientsSleep-Better often experience pain, fatigue, and discomfort that interferes with sleep.

While it’s not always easy, it’s important that you get the best sleep possible, as sleep deprivation can weaken your immune system and make symptoms or side effects, such as chemo brain, worse.

Improving sleep hygiene, treating sleep disorders, and participating in cognitive behavioral therapy can help cancer patients get better sleep.

How Cancer Affects Sleep

Sleep disturbances are not unusual among cancer patients. Between 30 to 75% of cancer patients experience sleep problems. Unfortunately, sleep problems can persist even after treatment has ended, with 25% of survivors reporting continued difficulty sleeping.

Cancer side effects and treatment can make it more difficult to sleep. Increased anxiety and depression can make way for insomnia. And with extensive treatment, you may be fatigued and experience cancer-related sleep disorders. It’s also common to experience hot flashes and night sweats. Sleep disorders can be serious and require treatment to improve your ability to sleep, as well as your quality of life.

How You Can Sleep Better During and After Cancer Treatment

Better sleep habits and treatment for sleep disorders associated with cancer can improve your sleep during and after cancer treatment. Try these tips and methods to improve your sleep:

  • Choose comfortable bedding materials: Cancer patients who experience night sweats or hot flashes may have difficulty sleeping due to heat. You should lower your bedroom temperature, and choose bedding and clothing that sleeps cooler and is more breathable. If you are experiencing discomfort and sensitivity to cold from chemotherapy, a memory foam mattress can offer softness and heat retaining properties.
  • Maintain a sleep routine: Go to bed at the same time every night, even on weekends, to help train your body to go to sleep at a regular time. You can support a regular sleep schedule with a sleep routine, going through the same actions before bed each night. Your routine can involve stretching, brushing your teeth, reading, and other nighttime tasks. The exact actions you do aren’t as important as doing them on a regular basis.
  • Try cognitive behavioral therapy: This therapy is helpful for insomnia, using techniques to reframe your emotions and thoughts around sleep. You will learn relaxation techniques and deep breathing exercises to help you fall asleep. You may also promote restfulness with progressive muscle relaxation and other therapeutic techniques.
  • Get treatment for sleep disorders: If you’re suffering from sleep disorders, it’s a good idea to talk to your doctor about treatment so you can get better rest. Good sleep is important. Sleep disorders may include those that are common among cancer patients, including insomnia, excessive daytime sleepiness, or restless legs syndrome, but other disorders, such as sleep apnea or narcolepsy, should be addressed as well to improve your sleep quality and quality of life.

Sara Westgreen is a researcher for the sleep science hub Tuck.com. She sleeps on a king size bed in Texas, where she defends her territory against cats all night. A mother of three, she enjoys beer, board games, and getting as much sleep as she can get her hands on.

How Does Using Paid Time Off Impact an SSDI Application?

If you are applying for Social Security Disability Insurance (SDDI), you may wonder if you have to stop working before you apply. You may also wonder if you are allowed to use your sick time, vacation time, or some other paid time off.

The first thing that the Social Security Administration (SSA) looks at when determining if you meet their definition of having a disability, is whether you are currently working. SSA believes that if you are working, then you are able to work and do not have a disability. But there is a big difference from working 40 hours a month as a receptionist and working 160 hours a month as an attorney. Each year, the SSA establishes a dollar threshold amount, and if you make under that amount, you are not considered to be working, according to SSA. This threshold is called Substantial Gainful Activity (SGA).

In 2017, the SGA is $1,170 per month for individuals with a disability other than blindness. If you make more than the SGA, you will not qualify for SSDI and your claim will be denied. The SGA for blind applicants is $1,950 per month. These amounts are your gross earnings.

When determining your income, the SSA will only look at earnings derived from actual work activity in the month under consideration.  That means that sick days, vacation days, or other paid time off will not be considered.

So, if you worked 5 days in a month, and then took 15 sick days, only the 5 days of work will count towards the SGA threshold. If you work 2 weeks in a month (10 days) and then take the next 10 days off using accumulated vacation time, only the 10 days you worked will counts towards the SGA.

This is important, because it means that you can apply for SSDI, without having to first use up all your paid time off.  And, since there is a five-month waiting period for SSDI benefits to begin, you paid time off can help bridge that gap.

For more information about SGA and applying for SSDI, visit: https://www.ssa.gov/pubs/EN-05-10029.pdf or https://secure.ssa.gov/poms.nsf/lnx/0410505010.

Early Withdrawal from Retirement Plans

Need Cash? Is early withdrawal from a retirement plan right for you?

Have you been financially impacted by a cancer diagnosis? Need access to money to Early-Withdrawlpay your medical bills or daily living expenses? Withdrawing money from your retirement plans may be an option for you.  However, it is important to understand the tax implications of doing that.

Fortunately, the IRS understands that you may need to dip into your retirement savings a little earlier than expected. And, unlike most of the tax code, this is pretty easy to understand.

Normally, if you withdraw money from a 401k or IRA plan before reaching age 59.5, you would be subject to an “early withdrawal tax” of 10%, above and beyond the normal income tax owed on the withdrawal. However, here are three exceptions to that rule, which can really make a difference:

  401K Plans IRA, SEP IRA, SIMPLE IRA, & SARSEP Plans
If the participant/IRA owner is totally and permanently disabled. No early withdrawal tax No early withdrawal tax
If your amount of unreimbursed medical expenses is greater than 10% of your Adjusted Gross Income. No early withdrawal tax No early withdrawal tax
If you are using your withdrawal to pay for health insurance premiums while unemployed. 10% early withdrawal tax applies No early withdrawal tax

There are close to 15 more exceptions to the Early Withdrawal Tax.  It is also important to know that with ROTH IRAs, you can always withdraw the money you’ve contributed (not the interest earned) tax free and penalty free.

When considering your financial situation as you face a cancer, remember to count every dollar. There could be money out there you thought you could not touch!

For more information on navigating finances after cancer, visit CancerFinances.org, read the financial topics on the Triage Cancer blog, or visit our other financial resources.

Important Social Security Information for People Affected by Hurricane Harvey

The following information is from the Social Security Administration’s press release, issued on Thursday August 31, 2017. Our hearts go out to all those impacted by Hurricane Harvey.

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Many Social Security and Supplemental Security Income (SSI) benefit payments are scheduled for Friday, September 1.  The following information covers the various delivery methods for these payments in the wake of Hurricane Harvey.

Payments by Paper Check Delivered by the US Postal Service

Hurricane Harvey’s impact on the Gulf Coast resulted in the temporary suspension of mail delivery service, as well as the closure of some postal facilities in the Houston area.  The U.S. Postal Service is providing additional information on how customers displaced by Hurricane Harvey can retrieve checks they receive via the mail.

Provided here about.usps.com/news/state-releases/tx/tx.htm is a list of Post Office locations, by ZIP Code, where checks will be made available for pick-up beginning Friday, September 1.  People must have proper identification to receive their check.

Payments by Direct Deposit

Nearly all payments issued by direct deposit will arrive as scheduled.  If a person’s payment is delayed, they should contact their financial institution.  If the financial institution is not operating, please see the “emergency payment” information below.

Payments by Direct Express Debit Card (a Treasury Department program)

For recipients in the affected areas who receive their payment through a Direct Express card, fees will be waived, even if they have evacuated out of the area. Payments will be posted to Direct Express cards on September 1.

People may contact Direct Express at 1-888-741-1115.

Emergency Payment Locations

Social Security has established three emergency payment locations in Texas where Social Security and SSI beneficiaries may request an immediate payment in person if they cannot receive their regular payment.  The locations and hours are:

Friday, September 1, and Saturday, September 2:

Houston: NRG Center
2 NRG Park, Houston, TX 77054
From 9:00 AM – 4:00 PM

Dallas: Kay Bailey Hutchison Dallas Convention Center
650 S. Griffin Street, Dallas, TX 75202
From 9:00 AM – 4:30 PM

Austin: Tony Burger Center
3200 Jones Road, Austin, TX 78745
From 9:30 AM – 3:00 PM

For people who cannot receive their regularly scheduled Social Security payment as a result of Hurricane Harvey, in most cases they can go to any open Social Security office and request an immediate payment.  A list of offices that are currently closed, as well as additional information for the public, is available at www.socialsecurity.gov/emergency.

To find the nearest open Social Security office outside of the affected areas, call 1-800-772-1213 (TTY 1-800-325-0778) or go to www.socialsecurity.gov/locator.

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To get more Social Security news, follow the Press Office on Twitter @SSAPress.

Losing Your Health Insurance Coverage? Get the Details on Changes to Special Enrollment Periods.

You may qualify for a special enrollment period (SEP) to buy coverage through the Changes-to-Special-EnrollmentACA’s health insurance Marketplaces, if you experience a life-changing event that results in a loss of coverage, such as:

  • losing your employer based coverage,
  • aging out of your parent’s health insurance coverage, or
  • moving to a new state.

During a SEP you have 60 days to shop for, and buy, new health insurance coverage in the Marketplace. You may also add family members to your coverage during a SEP, if you get married, or give birth to or adopt a child.

Recently, the rules around special enrollment have changed by the Department of Health and Human Services (HHS) and there are a few extra steps that you now have to take.

On June 23, 2017, HealthCare.gov began requiring applicants to submit additional information to conduct a pre-enrollment verification of eligibility for a SEP. What this means, is that once you pick a plan the Marketplace will “pend” your enrollment and you will have 30 days to submit documents to confirm your SEP eligibility before you can begin using your coverage. When you submit an application on HealthCare.gov, you will get a notice with a list of documents you can send to provide this confirmation.

As soon as your SEP is verified, the Marketplace will send your information to the health insurance company you chose and your coverage will start based on when your SEP started and when you picked your plan. In some cases, this will be retroactive.

For more information and to see a copy of the various notices you may receive, visit the CMS Center for Consumer Information and Insurance Oversight website.

The Triage Cancer Conferences Are For You

Who should attend a Triage Cancer Conference?  In short, everyone in the cancer community.  We are coming to 3 different communities with a FREE program that has been designed for patients, survivors, caregivers, health care professionals, and advocates.  Whichever group you are part of, we will provide you with practical relevant information about navigating cancer survivorship, from the point of diagnosis, throughout life.

Where will we be in 2017?

What topics will we cover?

  • Cancer Survivorship: Advocacy & Being Empowered
  • Health Insurance: Understanding Your Options, Navigation, Prescription Drugs, and Appeals
  • Managing Finances & Accessing Financial Assistance Options
  • Taking Time Off Work & Disability Insurance
  • Returning to Work After a Cancer Diagnosis
  • Nutrition
  • Be Prepared: Estate Planning and Other Documents

The cost to register

$0.  Free.  Nothing.  And lunch will be provided free, too!

Are you traveling to the Conferences?

If you are a patient or survivor, we are pleased to offer travel assistance to those who would like to attend one of the 2017 Triage Cancer Conferences, but need help covering the cost of traveling to the Conferences. Travel assistance is limited and applications are reviewed as they are received or until funds run out, so we encourage you to apply as soon as possible.

Free Continuing Education Units

For oncology nurses and social workers, we are pleased to offer up to 6 contact hours absolutely free.  Our conferences have been approved though ONS and NASW, as well as the West Virginia Board of Social Work.  Again, the conferences cost nothing to attend, and offer you up to 6 contact hours free.

Still undecided?

Well, listen to what attendees of the 2016 Triage Cancer Conferences thought.

“I wish all patients could have this training.” – Attendee in Nashville

“Very good seminar! Enjoyed attending and hope that I can share these resources with other cancer patients!” – Attendee in Salt Lake City

“I would like to thank you so much for the very pleasant and informative conference. I am a 6 year cancer free survivor and I so wish that I had this information available to me when I was going through my cancer treatment. I came here today to try to get any resources I could pass on to others in order to help them through their cancer in any way I can. Please don’t stop doing what you are doing. You are so appreciated.” – Attendee in Philadelphia

Triage Cancer Conferences

We hope that we’ve made the case that attending a Triage Cancer Conference will be informative, valuable, and worthwhile.  And, we really hope to see you there!

For more information, please send an email to info@TriageCancer.org or visit the Triage Cancer Conference page on our website

Comfort Kits from GivingComfort.org

The cancer community is full of supportive resources.  Today we’d like to shine a light triage-cancer-blog-comfort-kitson a resource from the McKesson Foundation: Giving Comfort.  Giving Comfort is a program that puts together and delivers comfort kits to patients suffering from cancer.  Working with hospitals, care facilities and service organizations that support cancer patients, Giving Comfort gets these kits to someone who needs it, right when they need it the most.

The kits are customized by age group and gender and are full of things that are both helpful and comforting.  For example, a young girl would receive a kit with fuzzy socks, a soft blanket, a hope chest full of affirmation cards, a stuffed animal, a soft pillow case, a sleep cap and games.  A teen girl would get most of the same things, but with different games.  Giving Comfort came up with the packing lists after surveying over 1,000 patients, nurses and other oncology professionals.

Kits are assembled by a group of volunteers and they are distributed by a network of community partners.  Community Partners include the American Cancer Society Hope Lodges and the Ronald McDonald House.   Kits are provided to the community partners at no cost and are then given to patients at no cost.

To find out more about this thoughtful and generous program, visit http://www.givingcomfort.org.

“You have cancer.” Now what?

by Aditi Narayan, MSW; LIVESTRONG Program Manager

When Ana heard the words “you have cancer” at the age of 23, she was in shock.  She told her parents right away. Her mother wanted to know whether she could still have children after treatment for cervical cancer.  Her father wanted her to get a second opinion.  Her friends wanted to know how they could support her.  Ana wanted to know whether she would live and how much having cancer would cost – financially, physically, and emotionally.

Her doctor told her about the side effects of the recommended treatments, but Ana left the appointment with more questions than answers about the myriad ways cancer would affect her for the rest of her life.

Do I have to tell my coworkers? How much time will I have to take off of work? Can I drive myself to chemotherapy or will someone else have to take me? How much will this cost? Can I afford this?

Unfortunately, Ana’s story is all too common among the more than 15.5 million people affected by cancer in the United States. While your health care team focuses on your medical needs, LIVESTRONG focuses on you, not the disease. Our free, personalized and confidential one-on-one navigation services can help with financial or insurance counseling, education on diagnosis and treatment options, access to discounted fertility preservation services, emotional support, clinical trial matching, and more. We can also help you and your family find essential resources to assist with daily practical issues. Our services are available via phone and online from 8:30am-5pm ET Mondays-Thursdays, and from 8:30am-4pm ET on Fridays. Call 1-855-220-7777 or go online at LIVESTRONG.org/CancerSupport to connect with a navigator today.

Iram, Brain Cancer Survivor and a former LIVESTRONG Navigation client

Iram, Brain Cancer Survivor and a former LIVESTRONG Navigation client

Recognizing that you and your loved ones may want to look for information on your own prior to or instead of contacting a navigator, we created an extensive suite of helpful articles, videos, and tools. Explore this information at LIVESTRONG.org/WeCanHelp.

Within one week of her call with her LIVESTRONG Navigator, Ana

  • Had a better understanding of her cancer diagnosis, the recommended treatment and the potential side effects;
  • She had received free medications to start the process of freezing her eggs at a discounted price;
  • She had scheduled an appointment with another oncologist to get a second opinion after learning her insurance would cover it;
  • She had discussed her financial options with her case manager so she wouldn’t feel overwhelmed with medical bills;
  • She had signed up for an online support group her case manager found for her to learn about ways she could take care of herself during and after treatment; and
  • By using LIVESTRONG Rally to mobilize her support network, she knew which of her family members and friends would be taking her to chemotherapy and bringing her meals for the next two weeks.

By connecting Ana with the resources she needed, LIVESTRONG saved Ana thousands of dollars in fertility preservation and stimulation medication costs, and also saved her the hours and energy it would have taken her to identify these resources and contact them. Contact us to learn about how we can help you today.

livestrong-logo

Since 2004, LIVESTRONG Cancer Navigation has helped over 115,000 people like Ana and Iram navigate their cancer at no cost in English and Spanish by being a central hub of cancer support services.

When Adult Children Get Sick, It May Be Hard For Parents To Get Information

When Sean Meyers was in a car accident on a November evening three years ago, he was flown by air ambulance to the emergency department at Inova Fairfax Hospital, in Northern Virginia. With his arm broken in four places, a busted knee and severe bruising to his upper body, Meyers, 29, was admitted to the hospital. While badly hurt, his injuries didn’t seem life threatening.

When his car went off the road, Meyers had been on his way to visit his parents, who live nearby in Sterling. They rushed to the hospital that night to wait for news and to be available if Sean or the hospital staff needed anything. But beyond the barest details, no one from the hospital talked with them about their son’s condition or care, not that night nor during the next 10 days while he was hospitalized.

“All the time he was there, the hospital staff was very curt with us,” said Sam Meyers, Sean’s dad. “We couldn’t understand why we were being ignored.”

After leaving the hospital, Sean moved into his parents’ spare bedroom temporarily to continue his recovery. About a week later, he was in their kitchen one evening with his girlfriend when suddenly he collapsed. He was rushed to the nearest hospital, where he died. An autopsy revealed that he had several blood clots as well as an enlarged heart.

For Sean’s parents, the results were particularly wrenching because there’s a history of blood clots on his mother’s side of the family. How much did the hospital staff know?

“It might have saved his life if they’d talked to us,” Sam Meyers said.

A spokeswoman for Inova Fairfax said, “We cannot comment on specific patients or cases.” But she noted that information about a patient’s care can be shared in a number of circumstances.

These days, when people think about patient privacy problems, it’s usually because someone’s medical record has been breached and information has been released without their consent. But issues can also arise when patient information isn’t shared with family and friends, either because medical staff decide to withhold it or patients themselves choose to restrict who can receive information about their care.

The federal Health Insurance Portability and Accountability Act of 1996 (HIPAA) established rules to protect the privacy of patients’ health information while setting standards for hospitals, doctors, insurers and others sharing health care information.

Stepped-up enforcement in recent years and increased penalties for improper disclosure of patient information under HIPAA may lead hospitals and others to err on the side of caution, said Jane Hyatt Thorpe, an associate professor at George Washington University’s department of health policy and an expert on patient privacy.

“For a provider who’s uncertain about what information a provider may or may not be able to share, the easiest and safest route is to say no,” she said.

However, the law is actually quite permissive about providers disclosing information to family members and others who are involved in a patient’s care, said Thorpe.

“If the physician thinks it’s in [the] patient’s best interest to share information with mom or dad or whatever, they may do so,” she said.

They may also decide not to share information, however.

Generally, if a patient is unconscious and unable to give permission to discuss his medical information, a doctor may share details about his health with family and friends. But even if the patient is alert and able to make a choice, a health care provider can use discretion in deciding how much to tell family and friends.

Dr. Wanda Filer, president of the American Academy of Family Physicians, recalled a patient who was an HIV-positive sex worker who didn’t want his family to know about his health, even as he was dying. She honored his wishes. “The family was left in the dark,” she said.

State laws may be more restrictive than HIPAA, requiring patient permission to disclose information to others, said Elizabeth Gray, a research scientist at George Washington University’s department of health policy. However, Virginia law generally follows HIPAA on disclosures, said Gray.

In Sean Meyers’ case, there are unanswered questions. For example, “we don’t know what the patient actually said to the providers,” said Filer.

“HIPAA does allow information to be shared with family or friends based on the patient’s wishes or, if the patient cannot make his/her wishes known, then based on the family member’s or friend’s involvement in the patient’s care,” the spokeswoman for Inova said. The health system’s privacy policy states that it may disclose a patient’s medical information to a friend or family member as permitted under HIPAA and provides details about how to request a form to restrict such disclosures.

There’s no surefire way to avoid lapses in communication or ensure that providers get all the relevant information about a patient’s health. Most smartphones today allow people to store health care information that can be accessed by emergency personnel, said Joy Pritts, a privacy consultant who is a former chief privacy officer in the Office of the National Coordinator for Health Information Technology at the federal Department of Health and Human Resources. In addition to listing allergies and other health concerns, people could state their wishes about disclosing their health information.

In the case of adult children, it may be useful for the child to carry a signed document that authorizes health care providers to disclose and discuss health care information with the parents for a set period of time, said Pritts.

It’s no guarantee, but if a provider is on the fence about disclosing information, “it might help,” said Thorpe.

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

Infections – The Ugly Side Effect of Chemotherapy

triage-cancer-blog-infectionsWe are all familiar with the common cold, flu and ear aches.  These are all infections – either caused by bacteria or viruses.  Sometimes these infections need to be treated with prescription medicines, but often times our body just gets over an infection.  This is because our miraculous bodies have a built in protection called white blood cells.  When we develop an infection, our immune system produces more white blood cells to fight the infection.  This is the process in a typical, healthy person.

Unfortunately if you have cancer, you are not a typical, healthy person.  On top of the cancer itself, the treatment of cancer can make you sick.  Chemotherapy, while it may be saving your life, can also be putting you at risk of contracting an infection.  Chemo is a powerful drug that goes into your body and kills the fastest growing cells in your body – the good and the bad cells.  So the chemo kills your cancer cells, but it also kills your white blood cells.  Remember, white blood cells are the things you need to fight infections.  Generally, you will experience the lowest white blood cell count 7-12 days after your last chemo dose, and it could last for up to a week.  This period of time is called your “nadir,” meaning lowest point.  At this point you are at the greatest risk of getting an infection.  During this time you need to be extra diligent in protecting yourself against, and watching for signs of, an infection. Infections during chemo can be life threatening and may delay your ability to receive your next life-saving chemo treatment.

What are the signs of an infection?

Fever is the number one and most serious sign of an infection.  Take your temperature anytime you feel warm, flush, chilled or generally unwell.  At your nadir you may not be able to fight this infection on your own, so you need to call your doctor if you temperature is 100.4ºF or higher for more than 1 hour, or a one-time temperature of 101ºF or higher.  Seriously, night or day, call your doctor.  Make sure you:

  • Keep a working thermometer near you, and know how to use it.
  • Keep your doctor’s phone number with you at all times. Make sure you know if there is a different number to call when the office is closed.  Do not hold out through the night, waiting for your doctor’s office to open.
  • If you end up going to the emergency room, tell them right away that you are undergoing chemotherapy. You cannot wait around in a germ infested waiting room while your infection is left untreated.

Other signs of infection include:

  • Chills and sweats, with no fever
  • Change in a cough, or a new cough
  • Sore throat, or mouth sore
  • Shortness of breath
  • Nasal congestion
  • Stiff neck
  • Pain when you urinate
  • Unusual vaginal discharge or irritation
  • Increased urination
  • Diarrhea and/or vomiting
  • Redness, soreness or swelling near surgical wounds or ports
  • Pain in the abdomen or rectum

If you experience any of these signs or symptoms you should call your doctor immediately.

Can you reduce your risk of infection?

Every school age child knows that you can avoid a cold or flu by washing your hands.  As a cancer patient receiving chemo, you need to be absolutely obsessive about this.  Good old soap and water are the best choice, but hand sanitizers are a good second choice. You should wash your hands:

  • Before, during, and after cooking food
  • Before you eat
  • After you go to the bathroom
  • After you change a diaper
  • After you touch your pet, or clean up after your pet
  • After touching the trash
  • Before treating any wound

Beyond washing your hands, you should also maintain good oral and body hygiene, use disinfectants to keep your household clean, avoid coming into contact with sick people, and try to avoid getting scraped or cut.  You should also avoid undercooked or raw meat and eggs, avoid unpasteurized or raw products, and wash your fruits and vegetables really well.

Undergoing chemotherapy is uncomfortable enough without getting an infection.  Be overly observant and very, very clean and you can minimize your chances of getting infections.