Notebook in Breast Cancer

The day you are diagnosed with breast cancer is a day you will never forget. It is the
moment that your world is turned upside down forever. Nothing about you or your life will
be the same after that. It is such a defining moment, the moment when you enter
Cancerland, you think it is something that you will remember forever. You will now hang
on every word uttered to you by every medical professional you will meet. This is a big
thing—how can you forget it? Everything about this experience will be etched in your
memory forever, maybe even verbatim.

Well, the truth of the matter is, not every word you hear will be carved in stone on
tablets that you can pull from the recesses of your memory at will. You will probably
remember the diagnosis, I’ll give you that. Everything else? That’s a little tougher.

As a journalist, I try to bring my inquisitive, analytical outlook to everything I do. I
started to take notes from the moment of diagnosis, but it soon became clear that this
would not be an easy task for me. There I sat, in the sterile glare of overhead fluorescents,
a poster above my head showing a cross-section of the breast and how a ductal carcinoma
in situ becomes invasive. My professor husband sat next to me (also taking notes). I
followed along diligently, and then it happened. A tidal wave of fear and shock washed
over me. It was the moment I realized, Oh, she’s talking about me. I lost focus and passed
the notebook to my husband. He continued to scribble in my book as I tried to wrap my
head around what the doctor was saying.

It is really important to keep notes, and not just notes from the meetings with the
doctors. You will see many doctors. You will have many tests. You will be bombarded
with information. You will have more appointments than you can possibly comprehend.

You will become acquainted with many wonderful physician’s assistants and administrative
assistants and nurses and volunteers, and you will want to remember them. You may want
to write down an observation or two about something you encounter in this strange country
where you have found yourself—Cancerland. You will have lots of phone numbers and email
addresses and dates to keep track of. I have all the latest technological gizmos, and
some were quite useful to me during my treatment. However, nothing has been as
comforting as a good old-fashioned notebook. I don’t mean a journal where you pour out
your most inner thoughts. I mean a notebook. A place you can just jot.

Mine was a Jane Austen notebook. In fact, I had used it to plan a trip to Bath, England,
with my family, to pay homage to one of my favorite authors, so I have train times and a
hotel reservation noted in it. My daughter has written down something of an itinerary
—Pump Room? Fashion Museum?—and of course www.janeausten.co.uk. That took up
just the first couple of pages. The rest was blank. So rather than buy a new book, I made
this my cancer notebook. I happen to find solace in Jane Austen, so a lined notebook with
pithy quotes from her was something that provided great comfort to me.

Friendship is certainly the finest balm for the pangs of disappointed love.
—NORT HANGER ABBEY

Well, it also happens to be the finest balm when you are going through a wretched
disease, as I discovered. You should choose whatever works for you, but get something
that you can easily carry with you everywhere. The thing about a notebook is that it is
portable, can be beautiful, and doesn’t need a Wi-Fi signal. There were moments I could
have whipped out an iPad to take notes, but somehow that would have seemed a lot more
obtrusive.

It is also important to realize that you will probably need a stenographer with you,
particularly for the doctor appointments. As I skim through my notebook now, I see lots of
my husband’s spidery scrawl across the pages; clearly I was not very good at multitasking
in this instance—listening and writing at the same time when my health was the topic of
conversation! Almost all of the notes from doctor appointments are in my husband’s hand.

Phone numbers, observations, appointments are in mine. We would also write down a list
of questions before an appointment so we knew exactly what to ask when we got there.
Glancing back now, I see questions like Genetic testing? Prophylactic mastectomy on the
other breast? There are the notes from various appointments like this one post-op on the
final pathology report: “found a 3rd .3cm invasive tumor … mastectomy was right call.”

There is a double-page chart sketched out by my husband on which he tried to lay out the
various possible outcomes of a test I was about to have that would determine whether or
not I would have chemotherapy.

It may seem strange to say, but this notebook has become a sort of talisman for me. As I
have moved further away from the original drama of diagnosis and the seemingly endless
visits to the hospital for treatment, I have noticed how my notebook reflects the different
stages I endured. It charts progress from diagnosis to treatment, to post-treatment. It
reminds me of the people I met along the way who made things a little easier, like Mary
Redding, the amazing volunteer at the chemo infusion unit, and Shawnette Morton, the
gatekeeper to my plastic surgeon who managed to schedule every appointment to fit my life
as well as his! As I turn the pages and see them less and less densely packed with my
husband’s scrawl and more and more entries in my hand, it reminds me that I have come a
long way. Who knew a notebook could do that?

Notebook in Breast Cancer