Wednesday, July 21, 2010


Finally, I’m able to cry. I don’t mean hysterical crying on the chemo ward. I mean, feeling my anxiety, fear (yes that too) and grief with my feet on the ground.

I’m in the Sacramento airport right now, en route to my second round of chemo. I know exactly what to expect. Last night, I finally let it go. I’d been stressing, triggered by something A does that she doesn’t mean the way I hear it. I finally figured it out, and I told her. I started crying, and she held me. She cried too. It was good for both of us, to finally get it out.

This is happening in my body. I have no answers for why my medical team does anything; I just have to trust them. I don’t control any of this—I can say stop, and have when I was miserable and hysterical. I don’t dare say that when I mean it. I don't want that taken truly seriously.  I want too much to live.

I woke up this morning with a line from Pat Humphries’ “Walls and Windows” running in my head. I reached for my mp3 player, and listened to it again. And cried again. Here’s the line that got me:

“Did you sing your children lullabies, to calm their fears at night?”

I say I’m not afraid. Usually I mean it. I’m not consciously lying. I’m truly not afraid of death, though I don’t want it right now. I’m not existentially afraid of sickness or suffering. But this loss of control really gets me.

And the intermittent life. I feel well right now. I won’t Friday, and for at least the next two weeks. I will literally be sick half the time. And when I’m well, I can’t imagine that I am as sick as I am. No way do I have a potentially fatal illness. Look how alive I am.  See what I can do.

Then I go back to Riverside, and back to the beginning. Back to doctors and drugs and bad reactions and side effects. Back to nurses waking me every two hours for a vitals check. Back to coming home completely washed out for a week. Back to the incontrovertible knowledge that yes, this is real. And I don’t know what the ending will be.

My body is either responding as we speak, or it isn’t. I won’t know that for weeks. The next time I come down will either be for more of the same, or an even tougher regimen. I have no way of knowing. And no way of controlling. All I can say is go or stop. I won’t stop this (before my doctors do) unless it becomes truly physically intolerable.

It’s the intermittentness of sickness and health, and the knowledge that I may or may not ever truly get better. My well times could be as good as they are right now, or less and less and less. We don’t know.

I want my life back. And I don’t know enough yet about when I’m well and when I’m sick, to snatch it. I just want this to be over. And I want to be healthy.

When I was diagnosed two years ago, survivors came out of the woodwork to support me. Now I know what they lived through. I am learning what they knew.  I know why they were so strong, for someone just entering this struggle.  I appreciate them even more, for choosing to be there for me.

I hate this.  But I'm glad I finally feel it.  I'm not sheltering myself anymore.  I say I want to be whole.  Grief and fear are part of wholeness.  The only way I can do this is with my eyes and heart open.

I need to post this quickly; we’re boarding soon. Keep me in your prayers, everyone.


Alison said...

prayers thoughts love hugs - may you ever be wholly whole wherever your path leads

Grandmère Mimi said...

Much love and many prayers go with you Kirstin.

Tess said...

I'm new to your blog and very moved by this. Prayers indeed.

Anonymous said...

Lots of prayers indeed will continue from here.

Two Auntees said...

Prayers are covering you.

Debbie of Boise said...

Prayers ascending, my friend.

Harry Allagree said...

Every day...prayers, Kirstin...every day!

Kirstin said...

Thank you. Love to all.

claire said...

Tears are good. Expressing what you feel inside is good.
Everything about you is good.

May you have an absolutely blessed day.

OmPowered said...

"I'm not sheltering myself anymore. I say I want to be whole. Grief and fear are part of wholeness. The only way I can do this is with my eyes and heart open."

<3 Amen, my friend.