It has been ten weeks since I was diagnosed with stage IV breast cancer. After I was diagnosed the first time with cancer in 2006 I began to mark time in a new way.
The parent of a newborn starts with days, then weeks, then months and fractions thereof. “How old is the baby?” a parent is asked. “He’s 5 days old” or “11 and a half weeks old” or “16 months,” the reply will come. But when that child is a teenager no one will mark his age in days and half weeks and months. The importance of those fractions will fade. Once he’s got years under his belt their significance is muted.
Time now gets marked in rounds of chemo, time elapsed since diagnosis, months without disease progression. There’s always a mental countdown, a cognitive calculation going on.
I find myself obsessed with time in a new way, but also rapidly losing track of it. Granted, some may be chemobrain. I wonder now that I am on chemo for the rest of my life what it will mean to my brain. It’s a necessary evil, but concerning. The chemo that kills cancer cells is also killing brain cells. New evidence shows the reality of this condition, no longer a punchline or mere excuse for forgetfulness.
I always encourage people with cancer (and any illness) to keep a calendar of their treatment. There is so much to keep track of that having an easy reference point is good. When did you change doses of medications? when did you see certain side effect symptoms? Jotting them down in a calendar or noting them in a smartphone calendar can be helpful. Sometimes on paper, patterns will emerge.
Grief is such a wily companion. Like smoke it creeps into places when offered only the tiniest access point. Grieving the life we thought we’d have is important. It’s easy to say, “lives don’t always go the way we plan” but that undermines the emotional complexities of dealing with serious illness. Just because things don’t go as planned for many of us (most of us?!) doesn’t mean there isn’t a serious adjustment to make.
“Roll with the punches” and “live in the moment” are deceptively simple phrases of advice that are not only absurdly emotion-free but also easier said than done. More than once in the past few weeks I’ve challenged people whose best words of support have been to live in the moment. While I understand the ideology, and agree with the premise that we must enjoy the time we have, I defy anyone without a stage IV diagnosis to tell me that it’s the quality of your years, not the quantity of them. These are things that healthy people say. Yes, quality matters. None of us want to suffer. I don’t. But years count, too. “Living in the moment” can imply that the grief process should be squelched or has an expiration date. Anyone who has experienced grief knows there is no expiration date.
Of course none of us knows our future. Some people try to tell me they don’t know their future either; they could get hit by a bus tomorrow. I love the response that Jen Smith suggested, “Would you like to trade odds?”
Acceptance of reality must come. Dwelling on the dark side of diagnosis won’t lead anywhere productive if dwelling is the only thing one does. I think that is the real meaning behind the idea of focusing on today. The acceptance of reality does come. Of course, that’s complicated when what the reality of what one’s prognosis is unknown. I have quickly built up tolerance for discussing the most serious and unpleasant ramifications of my condition. I occasionally sleep through the night. But I don’t know how long it will take to wave goodbye to my children in the morning, or tuck them all in at night, or talk about the future without feeling pain with the joy.
I mark the time. I’m back to being someone who counts the months and weeks and days. Counting them, appreciating them, grieving them. All at once.