Finally, I have claimed one of the rooms in our house as my own. No longer will it be where the cat hangs out all day with two obsolete computers, a vacuum cleaner, and a guitar that hasn’t been played since I gave up trying to be Bonnie Raitt. It is becoming a place for my music, my musings, my self. Creating my space has necessitated a flurry of intense Spring cleaning, deciding what should stay and what should go. It was in the throes of such sorting and the shredding of statements and bills and really old Tax returns, that I happened upon the bright green Cancer 101 planner, the “welcome to cancer” gift given to me by the Breast Patient Navigator who, not unkindly, delivered my diagnosis seven months ago. Just in time for the holidays.
It has helped enormously to record in one place the forced rearrangement of my routines. Within its plastic accordion folder I have dutifully filed pathology reports, research, bills, and insurance statements. In the three-ring binder, I track appointments, symptoms, medications, conversations. The costs of my cancer are all in one place. Out of sight and out of mind, it is a symbol of one of the compartments of a life that used to be easier to compartmentalize.
Leafing through the calendar, I turn to November, and I am struck by just how busy and important I appeared to be. Appointment after appointment, fairly standard calendar fare, and in the margins hastily scribbled notes, quotes, questions, acronyms, and phone numbers. A reminder to “download new patient forms,” a smiley face next to “remove drains.”
Some dates tell more of a story than others, and I am drawn to November 11th, Remembrance Day, previously associated with a lasting image of my beloved granda, a veteran of both World Wars, medals and a red poppy pinned proudly to his lapel.
Encircled in black pen, “1PM Diagnosis” defines November 11th 2011. Parenthesized below “genetic testing” on November 30th is “negative.” Such deceptively simple pronouncements, and too many of them coming at me too quickly. Thus it continued through December, January, and February. Then a single post-op appointment in March. Nothing in April. Nothing in May either. A calendar bereft of medical appointments. Thinking I had been forgotten, I called the oncologist’s office last week and was actually relieved to find they have me on their calendar for May 29th – no need to rearrange my schedule after all. How different from what I wrote in myths that matter surmising then that for those ensnared deeper in its labyrinth than I, cancer is a full-time job . . .
The shock of the diagnosis is initially numbed by a flurry of appointment-making and form-filling, the latter of which necessitates a foray into the family medical history, which makes for interesting long-distance phone calls that demand at least one of us to demonstrate the tact of a private-investigator and the determination of a geneaologist.
The urgency has all but disappeared. Could it be that I miss the attention and those felicitous social connections that accompanied the diagnosis? From inconsequential chatter with cheery assistants who called to confirm I would be there fifteen minutes prior to my appointment, to confidences I had felt compelled to share with patients waiting in hospital waiting rooms. Could it be that I miss the concern with which the Breast Patient Navigator inquired if someone would be coming with me to those early appointments and how she seemed a bit worried if I said I didn’t know (because sometimes I really didn’t know if I wanted to put my husband through it)?
Always polite and punctual, I was declared the darling of those who coordinated my care and deftly handled the insurance companies as well as the different time-zones and holiday schedules of three surgeons, two in Arizona, the other in Texas. A busy business indeed. There was a reassurance in the social nature of it, in stark contrast to the time done in “solitary confinement” – that period between the nurse leaving and the doctor arriving, the interminable stretch of a Google search for answers that lead only to more questions, the claustrophobic hour on an MRI table while the technologist watches from the safe distance of a different room, the pregnant pause right before a test result is shared, etcetera, etcetera . . .
In A Piece of Work, the documentary about her life, Joan Rivers shares she is driven still by a need to have “every hour of every day in her appointment book filled.” Holding up a blank page on her calendar, she exclaims “You want to see fear. I’ll show you fear.” Thus it was for me in the days and weeks immediately after cancer came calling. Reassuring, I suppose, to know someone was keeping an eye on me. But the phone calls came to an end and the appointments too, and I was unceremoniously sent on my way at 10:30AM on February 17th. Released back into the largely unscheduled life I had been living before November 11th, I clutched in my hands a prescription for a year’s worth of Tamoxifen and ten pages detailing its side effects as well as those of the four cycles of Taxotere and Cytoxan I would subsequently decline based on my Oncotype DX Recurrence Number.
I was released. Just like that. Not really knowing what to expect and certainly not anticipating the medical oncologist’s subsequent cancellation of my prescription, I “resumed normal activity.” Now I’m sure it wasn’t personal and that my learned oncologist hadn’t felt slighted by my decision not to pursue chemotherapy nor my seeking a second opinion. Still, I walked away from my fifteen minutes with her feeling that perhaps her expertise lay not in the treatment of people, but of tumors.
So it is with mixed feelings that I make room for the Cancer 101 binder on a bookshelf in my new space. Within it, I can look back and look forward to December 31, 2019. You see it includes a ten year planner “to give patients and their loved ones hope.”
As I write, I find a certain irony in hearing the simple piano chords that have just signaled the start of John Hiatt’s “Have a Little Faith In Me.”
Oh, I know that faith and hope are not synonymous with cure, nor should they be. Nonetheless, I find hope in the commitment of The Army of Women to determine what causes and how to prevent breast cancer; I find hope within the powerful dialogue facilitated through Breast Cancer and Social Media every week, in the Weekly Round-up of blogs at Journeying Beyond Breast Cancer, and in the National Breast Cancer Coalition’s goal to “close its doors by the end of the decade because the mission to end breast cancer has been accomplished.” through activism, advocacy, and research. I am committed to doing my part to ensure that when I ring in the New Year on January 1, 2020, I will do so knowing that my daughter will never need a Cancer 101 Planner.