I’m an archivist by profession. And an anal-retentive control freak by nature. Yes, I am one of those folks who has successfully managed to combine my personal satisfactions with my career. And outside the general douchebaggery of office politics and people who need to seriously be committed to mental institutions, I do love that voodoo that I do everyday. (Yes, I color code.)
So this weekend, as I was in danger of allowing uncertainty and worry about test results to take me over, I decided to apply what I do best and get it all organized. It’s short-term satisfaction and long-term benefit all in one.
The first thing I did was grab one of my pocket-sized Moleskine journals and write a brief timeline of events that I could carry around with me and annotate. Some folks will want to use their smart phones, iPads, and such for this, but for me the little journal works fine. I don’t always want to carry my briefcase with me and I carry a moderately sized purse. This has already helped me to put the last 12 days or so in some perspective–it’s easy to become overwhelmed and lose track of when you saw that doctor, or talked to this nurse, or why you rescheduled an appointment for that procedure.
This is also useful if your phone goes dead (and that has happened) and lose that instant access to all the info that you have. So the pocket journal is my back-up. Medications, names, phones numbers, etc. I tuck it into a small pocket on the outside of my wallet.
The second thing I did was to create my own patient record. In this binder I keep all of my pathology reports, copies of ‘scripts, etc. And, once the insurance notices start coming, they’ll go here, too. For some an accordion binder may work just as well, I just like binders myself. I keep the questions I have asked the doctor, notes I’ve taken, etc. I am doing this in paper, clearly others can scan docs and keep all information in digital form. In the binder I also have a plastic page with pockets designed to hold business cards. Grab a business card from every doctor, practice, radiologist, etc. Business cards are not vanity–they contain important information that you need.
When I meet with the oncologist on Tuesday I’m going to begin recording conversations on my Blackberry. There will be way too much information for me to take in, but if I record it I’ll be able to listen again. And maybe I’ll think of more questions I hadn’t thought of at the time of the appointment. The smart and respectful thing is NOT to do this surreptitiously. You are a patient who wants to take charge of their care, not an agent with MI5.
As for information, much of the research I have done is on-line. Because there is so much and it’s rather a challenge to keep it in order, I recommend using a personalized web start-up page. I use Protopage, but Google, Yahoo!, and others offer similar products. They allow you to get to your information no matter where you are.
For my family, I have created a binder that holds information specific to my diagnosis. Easy explanations of the pathology results, treatment, etc. The folks at the National Breast Cancer Foundation sent me a DVD of Beyond the Shock which I will include as well. And because my mom doesn’t live close by, I’ve included some information about my health care team, a history of the hospital, maps to show you where it is, even a picture. It doesn’t matter that she won’t ever visit it, but it will give her a better sense of where these things happen and who is involved. What I will do is send her information that she can add to the binder (mom is strictly analog). In this way she will always have up to date information and will see in writing what we have talked about on the telephone in order to help her process it.
If you have a home office (impossible in my NYC apartment) you may also want to get yourself a substantially sized white board or dry/erase calendar. Handy to record appointments, medications, or what you might be feeling that day. I have a white board in the office where I work and I use it, primarily, to segment sections and add content on post-it notes. (If you’re OCD you will want the white board aesthetically perfect at all times and post-its work lovely for this.)
What is so scary about breast cancer is how it takes so much of the control we have in our everyday life out of our hands. In addition to the reality that cancer blows big time, managing our health in this time of crisis is a full-time job. Being organized just might keep us sane.
And, you never know, you might like it so much that you start organizing everything else in your life. Come over to the dark side, my friends. Organize a closet.