It would surprise you how unnerving a quiet night can
be.
Karen has been doing very well with the Zykadia. Her
energy, frankly, has been kind of startling. She’s out running errands just
about every day, reading a lot, doing things with her church, hanging out with
us past 10PM, and watching some truly sub-par television.
But throughout today and into tonight she did not do
as well. From very early in the morning she was sick and her stomach was sharply
and persistently cramping. So she ended up sleeping and sick in bed all day.
She joined us for dinner and was back in bed before we knew it. If she was on
her feet for two hours total today, I would be stunned.
It has been a day of sustained, dull suffering broken
up by a few moments of relative ease. For us both. Seeing Karen languish all
day was a terrible flashback to the grinding, bedbound wretchedness of chemo.
We know that the Zykadia’s efficacy will most likely wane by the end of the
year and that we will yanked back to those chemo days again. Actually, that’s
not quite correct—we don’t know that
the Zykadia will stop working so much as we expect
it. We wait for it. We are actively
waiting and watching for the first sign that, uh-oh, here we go. There is an unspoken diagnostic subplot woven through every day.
And now that I see all that written out I have to say
that what is really rattling me is not that today is a look back so much as it
is a nasty little peek into what lies ahead when the drugs—any and all of those
motherfucking drugs—stop working and days like today will be the new version of
good days, breaking up a relentless wash of awfulness with something small and
miserable that miraculously feels like a respite.
Two years in and we count time in prescription
refills, every call to the drugstore another uncertain step toward some cruelly
foggy terminus.
Karen has a PET scan later this week.
Against our better judgment, we expect good news.
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