Recently, when a nursing student interviewed me about my experiences with the healthcare system, my greatest resource was a 5 x 7-inch blue spiral notebook my sister gave me when I was first diagnosed with leukemia 11 years ago.
My little blue book is not just a chronicle of my treatment, it’s also a visual expression of my illness: a coffee stain here, shaky handwriting there, doodles throughout. And though tattered and worn, it has stood the test of time, and been with me all the way.
My mother, gone now for eight years, was with me then. She too left her mark on my little blue book, jotting down notes in her perfect handwriting. Of course, that was before people kept contacts in their cell phones, so there are also pages of important numbers and upcoming appointments, as well as books recommended, sentiments expressed, people to call — all in her impeccable script.
Most important were the dates of all of my hospitalizations, my relapses, and my four transplants, which provided a vital timeline for answering the student’s questions about the positive role of nurses during the treatment I received at the Dana-Farber Cancer Institute and Brigham and Women’s Hospital in Boston.
The transplant dates each marked a new “birthday” of sorts. I had four of them:
· Sept. 18, 2003
· Oct. 18, 2007
· June 10, 2008
· January 31, 2009 (the last and the best)
A book like that is a more personal record than some of the other, more public, venues now available to cancer patients — such as a cancer blog or the website Caring Bridge (caringbridge.org), which enables patients or caregivers to create their own private web page. Family and friends can receive email notifications upon each new entry and sign a guestbook if they wish.
A friend of mine who had melanoma created a Caring Bridge page, through which he and his wife kept the people who knew them informed of his progress through their entries — which became a kind of diary. Sadly, the cancer spread to his brain and ultimately throughout his body.
But our comments provided them with a support community that spanned the country.
His wife printed out the diary, just as my sister had done with the emails she wrote during my cancer treatment. I was usually too weak to type, but I could always jot a note in my book.
I still have those emails, but I’ve only pulled them out once or twice. It’s is the book I turn to frequently for memories.
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