The renewed course of steroids is working. The swelling on my neck and face went away almost immediately, and the headaches are controllable again. I feel like a different person. We’re turning our attention back to recovery from surgery and the whole experience: taking care of the incision and its soreness, working on the physical and cognitive after-effects of the surgery. The tortoise approach is the order of the day. My first goal is be to be able to resume teaching—probably half a class at a time, since they’re both three hours long—and then to add other things, slowly, after that. Although this whole experience continues to be disorienting, all of us are doing better with assimilating and adapting to the massive change from our lives a month ago. We are still counting our blessings, and appreciating just how lucky we have been.
Anyone who has worked with me, been on a committee I’ve staffed, or maybe just passed me on the highway knows that I use three-ring binders to organize information. I got some questions about what we put in our family hospital notebook, so here’s a summary of what we did.
For the actual hospital experience, we didn’t need an enormous binder. We started with a 1.5-inch one. Almost at random, we chose a set of 15 dividers. We didn’t use all of them during the hospital experience, though we came pretty close. Fifteeen was probably a better choice than twelve, our other choice. We continue to use the notebook even now, and as it's beginning to get full, may transfer up a size, but we didn’t need anything larger during the pre- and post-surgery hospital times. Because I’m compulsive and like pretty blue things, we used a binder that let us make our own cover and spine labels, and put a family picture on each with a nice blue background, as well as the title (Family Hospital Information; CKG Craniotomy; September 2008). It was nice to see the family picture all the time while in the hospital.
1 medical information and notes
all the notes taken in various appointments and the research we did as we were working our way though this process
2 sick leave log
a record of time spent on this adventure during the work week, starting with the CAT scan that revealed the tumor (periodically transferred to a spreadsheet as time/attention permit)
3 notes and information from others that might be helpful
information we got from people about contacts, helpful things to have on hand, things we didn’t want to forget
4 questions to ask
a running list of the questions that we wanted to ask various people; we just kept adding to it and then puled out the list when we were in interviews or appointments; we added to this all the time
5 coming appointments
we put appointments on our calendar but also hole punched and stored here every piece of paper confirming a coming appointment; we found ourselves in information overload often enough that the redundancy helped. We referred to this more often than we had expected. It was a good insurance policy
6 never used
7 random ideas and thoughts
as we moved from winding down regular life and switching full-time into medical-adventure- mode, this is where all the stray “to do” and “ooops, I forgot to…” items got noted, as well as the “here’s a task that needs to be done sometime” We didn’t get to any of these items until this week, but it’s been a nice list to have as we tentatively think about resuming some of our more normal life activities
8 craniotomy logs
counting log pages: blanks; hand-written filled out pages; the final versions we typed up periodically. We hole-punched the blank pages in advance so, as they filled, we could put them straight into this section of the notebook. We kept the current page we were working on taped to the back of the book, so it was always handy. A few of them ripped and caught on things, but as a system, it worked well enough for our purposes.
9 printed copies of nice email that came in that people brought me in the hospital
a warm-fuzzy and nice reminder that all of you were out there; not essential, but oh-so-nice
10 info on people
for Kearney, Shea and Michael; I printed and annotated screen shots of my email mailboxes so they would have a context for people whose names/institutions/connections to me they might not easily recall
11 notes and ideas for blogging
not used much; as we went through things, we knew what we wanted to say at pretty much every juncture
12 thank you logs
a place to keep track of the unbelievably nice things so many people did for us so we could make sure we got thank-yous out as we became able to do so
13 copy of my calendar
especially helpful in the beginning as we were winding down our real life and scheduling our medical stuff; for a short while, we used it as a redundant way to track sick leave; the calendar was most useful at the very beginning and eventually fell out of usage. At the beginning, though, very helpful.
14 medication information
All the information sheets we got on each medication
15 medical expenses
all the prescription receipts, co-pay receipts, etc.
We put an empty page protector at the very beginning of the book as a place to store items we were handed until we could get them hole-punched and filed. This wasn’t a big issue for whole sheets of paper, but we received a remarkable number of half-sheets, cards, and smaller items for which it was a terrific help. We used it every day.
For parts of the experience, we had a running TO DO list in the very front of the book that we looked at a lot and that we wanted right there when we opened it. That was especially important at the beginning of this adventure.
The hospital’s admission kit provided some printed tabs of their own: therapy instructions; medication information; physicians and providers; discharge information. We put them in the book, but didn’t use them. For us, the discharge instructions went most naturally in the medications section since that was our main use of them.
Finally, we hole-punched and stuck in the back of the book all the brochures we received on “having surgery at Carle” and “patient registration and admitting information” just so we’d have them near at hand. I don’t recall referring to them, but we had them to reference if we’d wanted to. We did all read through them.
Blogging is interesting. At an isolating time in my life, it’s kept us connected in ways we never imagined and been a lifeline in many ways. Writing every day has helped us organize a very strange experience. Your feedback and ideas have kept us thinking and meant so very much to us. We’re most grateful that you’re out there. Many have emailed about various posts, often mentioning that they have trouble leaving comments here. We’re new to this and will be looking into whether that’s because of something in the way we have set things up that we overlooked or didn’t understand as we started. Meanwhile, thank you for being out there. Have a great Saturday.