Living in the Moment or Maintenance Mode

Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work

FEBRUARY 20, 2017

Both of the title phrases come from Susan Gubar's column that I will shortly share. As many of you know, she is a wonderful writer who frequently contributes to The New York Times about her life with recurrent ovarian cancer. This essay describes the new territory that she and many others are exploring: not really well, but certainly not really dying...

Until quite recently, there were only two real cancer possibilities: possibly being cured or at least living with no knowledge of active disease and dying. There were limited treatments for recurrent/advanced/metastatic cancers, and people died fairly quickly. For many kinds of cancer, there are now quite long lists of possible treatments, and life can go on for a long time. Yes, one is forever on treatment. And, yes, each treatment lasts as long as it is working. Once there is evidence (think scans) of progression, it is time to change the treatment. There are so very many unknowns and uncertainties with this situation that everyone is living in a personal limbo.

I like Ms. Gubar's titles, but, even better, I like one coined by the women who attend my weekly group for women with advanced cancer. During a discussion one Monday, someone said something like: "We are living on borrowed time." Someone else immediately said: "Not borrowed. Rented. Borrowed is free, and we pay a high price." She was right.

In Maintenance Mode, Living in the Moment
Living With Cancer

For most people with cancer, life has conventional stages that I can sum up with acronyms: B.C. (before cancer), A.D. (at diagnosis), S.S.N. (some surgical nightmare), RATS (radiation therapies), ICH (in chemotherapy), followed by IRS (in a remission of some number).
Like a growing number of patients today, I inhabit a less familiar state:
maintenance. This new phase presents a viable alternative to remission which, I sometimes feel, is not everything it is cracked up to be.
Why does cancer’s version of “IRS” spawn fears that can rival those spiked by a letter from the other I.R.S.? The short answer: remission is challenging. It comes with fear of recurrence. It’s impossible not to worry: Will it last? Throughout three cycles of chemotherapy for ovarian cancer, I longed for the moment when the infusion of toxins would cease, only to discover that all sorts of physical and psychological aftereffects dampened my spirits during remission.
First, consider the all-consuming issues of hair and weight. “It’s just hair and it will grow back” is a theme song many of us hum in treatment. But if it grows back curly when it had been straight or white when it had been brown or thin when it had been thick, it can be distressing to look in the mirror. Also, it does not always grow back, as I can unfortunately attest. Similarly, the weight lost or gained (yes, it can be gained) during chemo may continue falling or rising after its cessation.

Read more:

Above content provided by Beth Israel Deaconess Medical Center. For advice about your medical care, consult your doctor.
View All Articles