The parallel calendars: Living between treatment cycles and ordinary days
A caregiver describes two juxtaposed realities in life with myeloma
Written by |
When I wake up some mornings, I check on my mum to see how she’s faring. Then I mentally review two different calendars.
One of those calendars is printed on pharmacy labels and hospital printouts. That calendar looks something like this: Day 1 of the cycle, Day 7, Day 16, infusion day, blood test day, scan week.
That calendar moves in orderly 28-day blocks characterized by numbers that decide whether we should brace ourselves for more challenges or if we can relax and breathe easily. I take note of this calendar as one of the many involved in my admin work.
The second calendar is owned by the rest of life. In it, one will notice that — unlike the first calendar that is filled with a lot of details pertaining to my mum’s myeloma and how she’s progressing — this one is more quiet.
In the second calendar, one will notice that my laundry has been piling up steadily along with other chores I haven’t had time to do. One also will observe that whenever friends send me messages, I respond to them several days later. And in that calendar, the mango season arrives whether we notice or not.
Both calendars are real
These two calendars hardly ever agree.
On the ordinary-day calendar, it might be a Wednesday like any other. On the treatment calendar, it is the Wednesday after the fourth dose, when my mum’s energy sometimes flickers like a bulb that will soon burn out without warning.
I always find myself translating: “Can we sit in the garden this evening?” becomes “Will her counts allow such an endeavor without risk?” Even the temptation to indulge in small pleasures requires negotiating between the two clocks, something similar to the impossible calculations I am used to.
There are weeks when the treatment calendar devours everything. Ordinary time vanishes. Then, without warning, a stretch of good days shows up — no rashes, no fever, the numbers are steady, she laughs more often, and it sounds like the old days — and ordinary time rushes back in, almost timid, as if seeking permission to exist again.
I feel some sense of guilt when I enjoy these moments of stability, because I know that somewhere underneath all this momentary tranquility, the other calendar is always ticking.
I am learning, slowly, that both calendars are real. The cycles are not the enemy of everyday life; they have simply turned into its new pulse.
On some evenings while I am seated beside my mum’s bed, I deliberately allow these two calendars to overlap. I don’t force them to match.
In these moments, I observe the way light falls across the room at 6 p.m., the same as it did before the arrival of myeloma. I can feel the tiny, obstinate elegance of an ordinary moment within the larger, unpredictable one.
We don’t get to select which calendar writes the day. But we can choose to keep turning the pages of both, side by side, with as much tenderness as we can bear.
Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.
Leave a comment
Fill in the required fields to post. Your email address will not be published.