Day +35

We had clinic again today. There was nothing new. Except that one of our cute nurses told us about her mother. She brought it up because her mother knew my mother when she lived in her assisted living home. And her mother had been battling stage 2 breast cancer, which is pretty treatable. But after her fourth and final round of chemo she became neutropenic (no ANC, where Claire was for quite a while in the hospital), got an infection that the doctors couldn't get under control, and she passed away unexpectedly. Things like this remind us just how serious all of this is. But we are going to keep plugging along, inch by inch, day by day. Dr.B said that after 100 days most people have about 50% of their energy back. We are a third of the way through the 100 days. The other day Claire said, "You know what? I'm starting to realize that 100 days is a really long time." Yes, my sweet daughter, it is. And of course, things don't end after the 100 days. It is just the next milestone, and there are more milestones after that. Claire had a few hard days this past week. She is lonely. She is tired. She is weak. She is frustrated that eating is still so hard. She would like to see some friends. (And, as well meaning as everyone is, my friends don't count as her friends. Nope. Not the same for a 19 year old.) I struggle, too. I told someone yesterday that I think there are a lot of emotions that we all still need to process, just as soon as the battle lines recede a little bit more. I am sometimes overwhelmed by what has happened and what is happening, almost like it's hard to believe, even though I have been right there in the trenches. I can't always relate to people, and I get frustrated that the first thing people say to me is, "So, how is Claire?", even though I know they are only asking out of love and concern. Now that my two younger daughters are back in school I have a goal of getting Claire out more. Tomorrow we are going to see an early matinee of Star Wars, hoping that the theater might be empty. May the force be with us.

Since I don't have much to say, I thought I would include one of Claire's poems that was published in her school's literary magazine last year. I put it on Facebook once, but I know that not everyone who reads this blog is on Facebook. It's a little dark, but that's what I like about it.


TABOO

I write based on Feelings.
But my feelings are different from most others.
Many girls my age worry about their looks
and their social standing.
Had I grown up unaltered like my peers
I might have also had this luxury.

I was fifteen.
Sound familiar?
It's the truth, not only a copied line.
I knew I was sick
but the cause was not easily discerned.
Only through the grace of God
and an able doctor
I underwent the torture that saved my life.

No one could see me, once the cancer had settled in.
And no one cared to.
I was the oddity, the taboo subject,
The joke turned reality.
"At least it's not cancer."
But what if it was?

Outside looked dead.
Inside WAS dead.
If I bled, would it come out red,
or the yellow and clear of the acid they put in me?
Perhaps the blood that came out wouldn't even
be my own.

Not to bore you,
or, more accurately,
Not to horrify you,
with the daily hell of doing nothing.
But the moral is endurance.
I am alive, if only barely.

I have often joked
that I am, at the same time,
the most and the least mature of all my friends.
I laugh, and they laugh, but behind that
there is a caution, don't broach
that taboo subject.

But I don't care. Laugh to hide the fear
and celebrate the moments
when you hear and can say, with truth,
"At least it's not cancer."

Claire Driggs
Pegasus 2015

       In a shirt given to Claire by her former nurse and fellow cancer warrior.

 Every Sunday night I fill Claire's pill box for the week. She takes about 19 pills a day.

        Faith and I enjoying the lights at temple square after her violin performance.