Variability

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Day 47 (round 3, day 5). 

Ghostly Kapiti

How much are you aware of the variation of your mood, your health, your energy? For all of us, sickness and health move in unexpected waves, and I know that at least for me the clouds have always come and gone. These days, the rhythmic chemo cycles get amplified by things like visitors coming and going, conversations with friends and clients, and even the weather, which sometimes make the highs more wonderful and sometimes make the lows more punishing. These mood and health shifts of mine do not tend to have the subtlety of my everyday life, the minor shifts in wind and temperature that require sensitivity and careful listening. Rather, these roar in with a gale, and blow out again leaving cobalt blue skies. And if you are visiting over the span of say weeks three to one, you get to watch a kind of devolution in my resilience and my capacity to do just about everything—from walk to smile to laugh. Dad and Jamie, alas, had such a visit.

Wigging out at my keynote

Sometimes it's most beautiful in the mist

Week three—last week—is generally forecast with sunny and clear moments. Dad came and saw me speak at my first keynote since the diagnosis and surgery (with my first big appearance in a wig—does that make it a big wig?). Naomi, Michael, Dad and I climbed up up up the escarpment. Melissa and I walked kilometers in the hills. On Saturday morning, we got Jamie from a foggy morning and whisked her the next day to Kapiti, where we listened to birdsong in the rain.  On that, the last day before Round 3, I felt like I could almost fly to the top of the lookout to eat the bounty of cheese and fruit and baba ganoush.  

 

And then the chemo begins, and the new battle starts in my body. I am a mere bystander to the cancer wars that happen inside me. My healthy strong body becomes feeble, my resilient mood becomes brittle, and my good health fades into fog. The steroids make me hard for even me to be around; the belly shot sends me just a little farther into the mists. For the first days of the week I just head into decline. Yesterday was always going to be a fairly miserable affair because Dad and Jamie were leaving and the belly shot would be in full bloom. Even inside the predictable misery, though, I didn’t count on the migraine nor on the fever that would rise beyond the “go to the hospital” point (though after Michael packed my bag and the kids were dressed and ready, the nurse told me not to go to the hospital after all).

At the top of the world

It is surreal living in a system that in some ways is so predictable and in other ways seems so chaotic. I can tell you when I’ll be most aching, most exhausted, most weepy. But I can’t tell you which sentence will send me over the edge, which conversations I’ll be strong enough to have, which days of this first week I can power through a piece of writing and which I can hardly get out of bed.

The next three days are forecast to be the most painful as the bone marrow turns over (but not the most emotionally exhausting now that the steroids are behind me). Then come the danger days when a fever lower than yesterday’s will send me to the emergency room. And then the third week when I feel so much better I can almost fly. And then one more spin around this block and, if this chemo has done its job, never again.

Because it is an uncanny match for the day at hand, here is today's poem from the poetry box from Mark. I hope that in the darkest days, I am not only killing the cancer but also growing something unknown and wonderful. I have no idea when the harvest might be, but “If the drink is bitter, turn yourself into wine.”

Let this darkness be a bell tower

Quiet friend who has come so far,
feel how your breathing makes more space around you.
Let this darkness be a bell tower
and you the bell. As you ring,
what batters you becomes your strength.
Move back and forth into the change.
What is it like, such intensity of pain?
If the drink is bitter, turn yourself to wine.
In this uncontainable night,
be the mystery at the crossroads of your senses,
the meaning discovered there.
And if the world has ceased to hear you,
say to the silent earth: I flow.
To the rushing water, speak: I am.
Sonnets to Orpheus II, 29
Rainer Maria Rilke