GIST Support Wiki

Staying organized through a Health Care Crisis


Staying Organized Through A Health Crisis

by Katherine Atteberry, used with permission

You hear the words “you have cancer” and the bottom falls out of your stomach. Your age or economic status doesn’t keep you safe. You worry how you are going to get through it. A tough road ahead can be made easier by knowing and accepting the journey for what it is right from the beginning. Also, by maintaining balance in your normal day-to-day routine through some organized systems.

Whether you are the patient or caretaker, clearing the physical, paper, technical and mind clutter will enable you to concentrate on the task at hand…dealing with your health.

MANAGING A HOME can seem like an impossible feat, but it’s important to maintain as much of a routine as possible.

PHYSICAL CLUTTER can be overwhelming to look at and causes stress (“I should be doing something with that stuff”) so eliminate as much physical clutter (piles of things, cluttered countertops and tables, laundry piles, toys, etc.) as possible.

· Give up perfectionism; focus on necessities.

· Do only what is physically possible to do.

· Consider outsourcing what you can’t do.

· Say “YES” to help - accept help from friends and family-it’s important to them to be part of journey – but set your boundaries – i.e., when, if and how much help you need or want.

· Arrange daily medicines in daily pill organizers; use a different colored organizers if pills are needed for morning, afternoon or evening.

· Be aware of what can and cannot be eaten; employ help with menu planning and grocery shopping and maybe cooking.

· Select a spokesperson to channel questions, meals, visits, etc. For instance, if there are only two of you perhaps only one or two meals a week will be ample – this will eliminate a lot of waste and overstuffed refrigerators and counters. If you have visitors, you can request more servings per meal or even more frequent meals.

· Replace expensive, dry-clean-only bed and chair coverings with washable ones.

· Know if flowers are allowed in the house or not; remove dead flowers immediately.

· Assign household cleaning tasks to other family members; to avoid stirring up dust around the patient, cleaning times can be scheduled when they are in another part of the house.

· Create a bedroom that is serene and relaxing.

· Have tapes, books and magazines of interest available to fill idle moments.


Paper chaos is one of the most frustrating aspects daily lives, whether healthy or not. With the complication of a health crisis and doctor bills and insurance statements get thrown into the mix and your stress level goes up. Keeping paperwork organized will keep you calm and in control.

FIRST AND FOREMOST, if you are the patient, work with someone you trust to help with the daily mail, bill paying and insurance. If you are a family member or the caretaker, understand what the patient requires in each of these areas.

DAILY MAIL is normally cast aside in piles in many households. With doctor and insurance bills, timing is of great importance. In order to stay on top of the mail, take action every day. There are basically three things you can do with it – think of the acronym FAT –

You can File, Act on or Toss any piece of mail that you receive.

· Create separate folders or bins for household mail according to the FAT theory.

· Create separate folders (if possible, different colors) for the health-related bills

· Sort daily mail into the appropriate bin


· When working with the bills, sometimes reconciling them with the insurance statements can be difficult, if not just downright impossible. Check with the medical and insurance offices to see what their procedures include. For instance, some insurance companies will just pay everything they receive from the doctors and no reconciliation would be necessary. Others may require Medicare payments to be paid first, and then the secondary insurance will kick in. So know what you have to work with. If you do need to reconcile, use colored highlighters for coding each insurance company – that way you’ll be able to recognize immediately which insurance company is covering what. (To keep it clear in your mind, set up a ‘cheat sheet’ with the companies and color codes on the cover of a file folder and be sure to highlight the name of the insurance company with the appropriate color as they come in.)


For regular home bills, consider setting up automatic withdrawal with your bank. If possible, pay the household bills in advance six months or so. If neither of these suggestions are possible, keep track of what needs to be paid by putting all of the bills in a “to pay” folder as they arrive. Also, do not remove the bills from the envelope – that just creates more paper clutter. Instead, open the envelope and note the amount due along with the due date and write it on the outside of the envelope. When it’s time to pay the bills, all you have to do is look at the outside of the envelope for the amount. Be sure to give yourself a good six days of mailing time.


Whenever you have to talk to a doctor or insurance representative about anything – always record the conversation on in a notebook (see the e-mail Cancer and The Notebook for details) – date of call, name of person you visited with, question you had and response of contact person. This will give you a trail for future follow up if necessary.


Whether we are ill or not, it’s imperative to keep our legal papers updated. If you do not have your legal affairs in order, contact a lawyer and arrange to do so. Here are some things to have in place:

· A will (with an administrator or executor named)

· Advance health directive (stating your wishes for health care in case you are unable to speak for yourself)

· Durable power of attorney

· List of financial institutions and account numbers where you have assets

· List of on-line accounts and how to access them

· List of contact persons or places important to your estate:

o bank(s)

o investor(s)

o lawyer(s)

o insurance(s)

o insurance agents or agencies

Being prepared is not just a boy scout motto, it’s an important tool to keep us ready for anything.

MIND CLUTTER can be damaging. Have you ever found yourself not able to sleep because the tapes in your head keeping playing? Turn the tapes off, put them to rest. Lack of sleep inhibits healing.

· So let go of past regrets that lead to depression, anger and frustration.

· Let go of all the ‘what ifs’ scenarios.

· Put questions and to-dos that come to mind into a notepad. Once they are written down, you can forget about them until you need to take action. If you are unable to write, use a message machine or recorder.

· Think postive thoughts.


This refers to message machines, e-mails, computers, cell phones, I-pods, etc. We live in an era of ‘connectivity.’ While on the one hand it’s easier to stay in touch with family, friends and work, on the other hand, it’s impossible to get away from family, friends and work. Unplug!

· Let your answering machine or voice mail take messages work for you. Think of them as your ‘robotic’ secretary.

· Keep a notepad by the phone to make notes of calls received. Return calls when you are physically able.

· Caretakers or family members can intercept the calls and only let through the ones you have energy for.

· E-mails require energy too. However they can be dealt with at any time during the day or night.

· Delete all Spam and e-mails that are of no interest to you.

If you normally journal, using your computer can be a positive tool. Write when you are able – it will help to reduce your stress and keep you present with all that you are dealing with.

One of the most important tools to help you stay organized while going through Cancer or any other health crisis is ‘THE NOTEBOOK’! Something as simple as a plain notebook and small calendar will make your walk through this difficult time so much easier.

THE NOTEBOOK: Our memories don’t always remember what they need in the best of circumstances, so having everything written down will help you to review, act or ask new questions about appointments, treatments, tests outcome, meds, doctors you saw, insurance issues and more. This will keep you organized, on track and in control. It’s an invaluable resource and I can’t push the use of one too much.

Here are some suggestions on how to use a NOTEBOOK:

· Write the date, time, name of doctor or nurse who attended you for each visit.

· Make notes about purpose and results of visit.

· Date every phone call to the doctor, pharmacy, lab, etc.

· Write whom you spoke with and the phone number

· Write what your question(s) or concern(s) are

· Write the response from the person you spoke with

· Write the action you took as result of the response

· Write down questions that come to mind in between appointments (put your questions in a different color, then run a line through it after the question has been asked and answered)

A small CALENDAR inside the notebook will allow you to keep track of appointments, treatments, when to take medications, etc.

If you like to JOURNAL, a notebook is also a good way to record what you are feeling and experiencing throughout the process, who helped you with what, who stopped by to visit, brought meals, gifts, etc.

Additional Tips for "the Notebook"

Michele Gaug kindly gave her permission for us to reprint this. She has collected a number of good sources on navigating the medical minefield, plus her own tips for being a savvy patient. If you read this, you can see that Michele has been a very strong, organized, and effective caregiver. Her tips are well worth keeping and using.

In today's world you are responsible for your medical care. Some Doctors are better communicators than others. My advice is to make a note book with a section on current blood tests, another section on scans and X-rays (most places can put them on CD for you). You should have reports for each scan, X-ray or PET scan. In a perfect world one can hope the results are read by the same person each time.

There is THE CANCER PATIENT'S WORKBOOK Everything you need to stay organized and informed. Author: Joanie Willis This can be found through Dorling Kindersley ( Much of the information prepares you for the next steps. My other favorite help book is the Everyone's Guide to Cancer Therapy (How Cancer is Diagnosed, Treated, and Managed Day to Day.) **Latest Options for Therapy***Life-Saving Questions to Ask your Doctor**How Patients and Families can contribute to their own well being.

You already have the best help with our GIST list people. Take their names and telephone numbers and ask for their help.

My final "must-have" items are 2 different medical dictionaries and MEDICAL LANGUAGE INSTANT TRANSLATOR by Davi-Ellen Chbner. I also have HANDBOOK OF PATHOPHYSIOLOGY (Causes*Signs & Symptoms*Disease Management) Springhouse Publication ISBN 1-58255-046-8 . The book gives the why and how. HANDBOOK OF DIAGNOSTIC TESTS A complete guide to diagnostic testing and interpretation. (from Lippincott Williams & Wilkins)

To help your GISTer get a binder and sort out sections for Doctors, Contacts, a copy of your insurance card and contacts for your insurance. company. You may appoint a health care surrogate that you can have act on your behalf.

Reference the Cancer Patient's Workbook. It is an interactive guide vital to helping the person with cancer stay organized. It offers straightforward advice on living with the disease, and tips on learning about and seeking the best treatment possible. It also offers laymen's explanations of medical terms and treatments, inspirational and humorous insights, and practical guidance for facing the daily challenges. A variety of worksheets help keep track of doctor visits, when to use medications, and what organizations to contact.

Doring Kindersley Publishing Inc 95 Madison Avenue, New York, New York, 10016 ISBN 0-7894-6782-8

Write on your CD's..... " CD belongs to Patient ________ ", please copy and return to (add address) If you send or leave a CD at another facility, you hopefully will get it back.

After each appointment try to get the last blood results and reports for any tests. This way you are always in charge of the info.

Keep a notebook section for appointments and what was done. Helps for insurance.

With the above books you can figure out the reports and be more efficient with time to work with the doctor. You can show up with prepared researched questions. Sometimes a copy of that info handed to someone makes it easier to discuss. It outs you on the same page, so to speak.

By getting yourself and/or your GISTer educated you are better prepared to help with the battle. You also have records that you can copy should you choose to go so some other doctor.

Share info with your Doctor - remember to do it where they still feel good in the situation. There are many ways to ask a question - those wit honey often get answers. Often just saying "I know how busy you are that you may have not heard about the list of products & Gleevec( Sutent or whichever drug) that may interact." Knowing how important this may be for you I brought you a copy for your files."


From Louise:

A few years ago I entered a list of all the meds & vitamins I currently take into my computer, with the dosage and frequency, divided into prescription and OTC, plus daily or "as needed." I also list the antibiotics that don't go well with Gleevec (citing the source), and a warning in boldface about the two drugs that give me bad reactions. Last, I list my PCP, oncologist and pain specialist with their phone numbers. It all fits on one sheet of paper. I update the list every few months. When I see a new doctor, I check to be sure the list is current, then print it out and hand it to them instead of trying to fill in their questionnaire. This way I don't have to keep it all in my head, which is already overworked, poor thing.

My next trick is another computer list, this one of my medical history, beginning with the rupture of my tumor in 1997. I very briefly state all the important events and update this list also, adding new events of significance, with the date, doctor's name and the hospital involved, if one. I also edit it for extra words, trying to keep the facts as succinct as possible. It now has spilled over onto a fourth page, no matter how hard I try to state, "Just the facts, Ma'am." I take this to every new doctor also, no matter what type of doctor he or she is.


Tip from George:

I have done a thing I learned from a lady at my Church. I have taken a USB flash drive, also known as a thumb drive, and entered all my medical information on it. I have also included a photograph of myself so there can be no doubt it is information pertaining to me. I put the flash drive on my key chain so that no matter where I go my medical information is available to anyone who has need of it.

In order to let those who may need to know, I looked on the internet for a graphic of a caduceus. I downloaded it and printed it onto a small label. I placed the label on the drive and covered it with clear tape. That way when it is in my pocket there is less chance the label will get worn off.

Here is a link to a good cadeuceus image:

Look for a drive which has a strong loop for attaching it to a key chain. Some of them have rather flimsy plastic loops which will break. If you can find one with a metal case, that would be best.


An idea from Bill, a 12-year GIST survivor:

I've developed a system where I have a CD with all my OR reports, PathReports, relevant CT/MRI/PET scan reports, and other "documents" that I feel are necessary for new doctor to understand my case. I have a plastic tote that has folders for each year and then I file reports by year. If I can't get a electronic records - most of the time - I then scan the reports that I think are important and keep them electronically on a removable hard drive. If I should go to a new doctor, which I just did, I burn a CD and hand it the Dr. The three ring binder may be appropriate for most folks, but I have a lot of reports so a CD is easier to carry. I see the CD as a distinct advantage in case I have to travel to an academic center and I can also email documents instead of mailing them.

Also see Getting Your Medical Records - HIPPA rules