Once I was in posession of my perfectly un-pink, spiral bound notebook, I set to filling its pages. In the early days, it was merely a to-do list: long distance friends to call before anything went on facebook– that’s no way for them to find out I had cancer, letters to write– authorization for friends and family to pick up my kids from school if I were unable, prep for diagnostic procedures. I carried it with me everywhere, even to the bus stop. Nurses would call all the time, with very specific prep for upcoming procedures or with more appointments for me, and I liked to have my book so that I could write everything down in the same place.
My cancer book evolved, becoming a place for me to write questions to ask at my next doctor visit. I was always careful to leave space for the answer below the question so that I didn’t have to turn the page back and forth between questions. When I sat down in her lovely office for my very first meeting with my oncologist, she saw me pull out my notebook and told me that I didn’t need to worry about writing things down, she would write down everything I needed to know while we chatted and I could take her notes with me. I tried not to take any notes the first few minutes, but I couldn’t help it. I’m so glad she didn’t challenge me– taking my own notes was part of my process.
During chemo, I got pretty hard core with my cancer book. Each day, I would draw a horizontal line to separate the page for a new day. Besides the day of the week and the date, each day was labeled to help me track my response to chemo. “R2D1″ corresponded to the first day of the second round of chemo. On the left for each day was a column of the meds I needed that day with checkboxes to mark when I took them. Since I was supposed to take my temperature each day to catch any infections early, I always left a blank where I could record my temperature. I made notes about my sleep– how long I napped and how well I slept at night. I would record any symptoms or reactions, things like hot flashes and bone pain, and when I started taking taxol, I also had a section where I recorded the extent of my neuropathy.
Now that I write it all, that seems like a lot. It really wasn’t that much, but the repetitiveness really helped it become second nature. Having it all written down made it easy each time I headed to the doctor, I could quickly give her solid details and she could assess if there were things that we should change. (We changed my meds several times based on how I was feeling.)
Out of chemo, beyond surgeries, the cancer book doesn’t live in my purse anymore. While I don’t write down every single headache, if I notice something a few days running, I make a note. It’s really reverted to the stage where I write down questions or concerns for my next appointment. Whether it was during chemo or now, in that crucial stage of survivorship where the fear of recurrence is always lingering just beneath the surface, it’s amazing how much easier it is to see patterns emerge when looking at pages in a notebook instead of trying to recall the details on my own.