How to Organize Cancer (Or Any Major Illness)

So... you or a loved one has been diagnosed with a major illness.  Besides the stress and fear, there's also the knowledge (even if buried way back in your subconscious) that there is going to be a whole crapload of information to keep track of, as well as the inevitable bills, even if you have great health insurance.  And chances are, you are going to need that information at some point or another (and I'm not just talking about bills here ~ I am not going to deal with money at all in this post, just ways of keeping track of things).

Now I'm someone who loves to organize and create systems, so when I was first diagnosed with cancer, creating the binder I'm going to show you was one of the first things I did.  Things like this calm me and make me feel like I have some level of control over my circumstances.  If that's not you (and I know that's not a lot of people), no problem!  When you or a loved one get diagnosed with a major illness, everyone says "What can I do?"  And most of them mean it.  Well, choose someone whose organizing abilities you trust, and send them the link to this site and have them do it ~  because this is going to be my first tutorial:

How to Organize Your Major Illness!

I make it sound so exciting, right?

To give credit where credit is due, most of my binder creation techniques come from Alejandra at alejandra.tv, where I purchased her Power Productivity Program (PPP) some time ago, and it has proven invaluable to me in many areas of my life. I also subscribe to her Member's Only Forum.  It's awesome and I highly recommend it to anyone who wants to add and hone organization in their lives.  Some of the items in my binder (both Alejandra's products and office supplies) I had purchased long before my diagnosis, and you can do the same or you can create or find your own.

Supplies (This includes the brands I use, but of course you can use any brand. There are also items you don't necessarily "need", but I designed this binder to be self-sufficient. In other words, you have all things you need at all times and never have to ask someone for a pencil).

• 1" Staples Better View Binder with D-rings (In my opinion, these are the best and can withstand some heavy abuse and don't open or break, and they come in an array of colors and sizes)
• Avery Extrawide Ready Index Dividers, 10 tabs (I like this product because the extrawide dividers leave me room to subdivide sections, which you will see in my bills section - they also are great if you put paper in plastic protective sheets - they fit inside these dividers)
• Binder 3-hole punch (this allows me to punch holes and place papers into my binder immediately so they won't get lost - if you choose not to get it, you will definitely need some sort of hole punch so you can put the many papers into the proper sections)
• Binder pencil case (to keep pens, pencils, and the mini-stapler or tape)
• Mini-stapler or small roll of tape to fit into pencil case
• 3-ring binder business card holders
•  Loose leaf paper
• 1 poly-envelope for 3-ring binders
• Post-it Stick on labels
• Label maker * (optional - I used this to label my sections)

Set Up and Description, Section by Section

 Section 1 - Calendar

 This calendar is a monthly calendar and it is used ONLY for my cancer treatments and appointments (admittedly, for the first few months these treatments and appointments took over my life and became the only things I needed to keep track of - everything else was delegated).  The particular calendar I use I had purchased from Alejandra.tv previously, but you can use any one.
     
The pictures are my actual calendar from my binder.  Everything you see here is real, haha.  Which also explains all the slashes through dates as they passed - I wanted to see the physical progression of time, and it made me feel better when I crossed out those dates.  It's not so great for a blog tutorial, and I apologize for that!

If you look closely, you will see there are circled #s on certain dates.  These are correlated with receipts of paid bills.  I get into that in Section 5 - bills/insurance.
  

In the March calendar you can see I also wrote down what meds I needed to take around my chemo dates, and checked them off as I did them.  This ended up working best for me, and I did not use the checklist I had created for it in Section 2, back when I thought that was how I would do it. And that's the most important thing about organization - it has to be something that WORKS FOR YOU!

Section 2 - Checklists
This is a section that I really thought I would use a lot, as checklists were a major part of my pre-chemo life.  I love checklists - they make me happy.  They just didn't work so well for this part of my life.  What I did end up using this section for was keeping track of things I had to do or needed done, both inside and outside of my cancer life.  I had a list of things I needed to do, like thank you notes and getting taxes done.  I also had lists of things that I needed done but couldn't do myself and/or could delegate.  This is a perfect place to keep a list of things, and then when people tell you they want to help, you have an entire list of things to look at and say "Hey - I need a birthday present for a 5 year old boy - would you be able to pick something up for me and wrap it, by Friday?"  I'm not showing pictures of these checklists because they are part of the Power Productivity Program I mentioned earlier, and that is proprietary to Alejandra.tv, but you get the point.

Section 3 - Medical History
This is a form I created from information I gathered from an online search I had done of planners for people diagnosed with cancer, before I decided to create my own.  This is not necessarily something I have needed as I've progressed through my treatments, but the advice was that even once cancer is beaten, checkups will continue for years, and things we never think we will forget we will have forgotten, and if we switch doctors we will have everything at our fingertips.  I wish I could remember what the sites were that I got this information from so I could give credit for the inspiration and ideas, but I don't. See? They were right - I did forget!  

Section 4 - Reports
This section was simply where I put all medical reports I got.  What I have in this section are biopsy reports, my EKG report, blood analysis, etc.  Several doctors have asked to see this information, and it was super handy to be able to just hand it over rather than waiting for hospitals to fax the information.

Section 5 - Bills and Insurance
Outside of the actual cancer and treatments, the thing I found most stressful was money and bills, and it seems this is common.  What this section is for is keeping track of bills paid and communications from insurance companies and hospitals.  Unpaid bills remained in a pile of my desk until I got to them, and to be honest sometimes they sat there for a month or more.  Whatevs.  This was important for me to handle because I'm the one in the family who handles the finances.  If you're not that person, this section may not be necessary for you, or you may want to have the person who does the finances handle it.  Much of this information I may never need, but if I do, I have it.

In addition to bills, there were many other communications I received in the mail, with a whole bunch of paperwork. I didn't want to throw them out in case I needed them (I learned that lesson through a reimbursement battle I had years ago with my old health insurance company), and I certainly didn't want to leave them on the counter, so I subdivided this section into 4 parts, based upon their source - Receipts, Emblem (Blue Cross and Blue Shield - not bills but statements), Care Core (They seem to be a subcontracted company that handles approvals of procedures), and Hospital Communications (NOT bills - these are written statements of findings and actions I must take).  This is what I used those Post-it stick on labels for. 

As far as bills, Remember those numbers on the calendar?  Those numbers correlate with copays and bills paid on the spot, usually at doctor's offices.  I numbered the receipts, and then placed the corresponding number next to the appointment.  Each receipt gets taped or stapled to its own full sized sheet of paper (this is what the mini-stapler or tape is for) and placed in the Receipts section in numerical order so I can easily reference it if an issue arises. And one already has - I got a letter from one office telling me I owed them a copay for a visit that I had already paid for.  I snapped a picture of the receipt with my phone and emailed it to them, and it was handled. (please note, in this picture I covered credit card information with post-it notes).

Behind the numbered receipts I have the bottom portion of the bills I paid by mail or on the internet, with either the check number I used or the confirmation code from the web. 

Section 6 - Notes

Here is where your loose leaf paper goes.  This section is for taking notes.  That's it.  It's one place to keep track of the names and dates and instructions and questions you have.  It's all in one place, and if you need to go back and find something, there are no little post-its scattered around your house that you have to find (although there are some post-its I taped into this section, admittedly!)

Section 7 - Medications
This section is where I have the original write-up of what my oncologist prescribed for me for my chemo, as well as the sheets that come stapled to all of my prescriptions with the warnings and refill information.  It's handy for handling refills, and has also been important because often new offices want to know what medications I'm on, and there is no way I'm going to remember.  This way I don't have to.

Section 8 - Symptoms
This is a section that, like the checklists one, I thought I would use more than I did.  It's a symptoms tracker that I had made based on research I did on various websites (I think I got most of it from the same one as the medical one).  I didn't need to track my symptoms because they were pretty much always the same, and I got them handled by being in communication with my doctor.

If you choose to use this, the idea is that you write your symptoms across the top (nausea, headache, etc), and then rate it on a scale of 1-10, one being barely there, 10 being unbearable (in which case I hope you would call your doctor or 911 immediately! I think you should call your doctor if your symptom is above a 3, but that's just me.)

Section 9 - Business Cards
I got a lot of business cards from doctors and I knew I would need to keep them for future reference (and I have needed a number of them).  Enter the business card holder.  Nothing more needs to be said.

Section 10 - Films
This section is where my intention was to keep the films I got.  They turned out to be a lot smaller than I thought they would be, as most of them were on CD rather than giant x-ray type pages.  So I also used the poly envelope as a place to keep cards and notes I got from people who love me.  :-)

And that's it!

Having this binder on me at all times has really made things streamlined.  Everything in one place in an organized fashion makes life much easier, especially when everything else has been turned upside down. And the times when I didn't have it on me and needed information, I was able to call my mom or husband and ask them to find me that information (so long as I knew where the actual binder was, LOL).

Thanks for reading, and as much as I hope you never need to use this because I hope you or a loved one never have a major illness to contend with, if you do, I hope this makes a difference for you.

XOXO