Saturday, August 1, 2009


Living out a nightmare is an interesting business. Everyone is still sleeping except my crazy husband who is riding his bike (*edit: he rode for 5 hours, 70 miles on his mountain bike. Standard Saturday fare!), so I will ramblemuse for you:

We threw a little party for Audrey last night and so I spoke with some parents whom I hadn't seen since the end of school. They were, of course, sweetly concerned, and I was in the this-was-a-nice-party-and-I-love-these-children-and-Audrey-was-so-happy-and-my-baby-is-probably-neutropenic-right-now-and-I-hope-he-didn't-get-germified-and-I-can't-believe-though-really-I-can-because-I'm-that-way-how-very-hard-it-was-for-me-to-think-tonight-so-sad-and-confused-I-kept-finding-myself-I-might-be-doing-worse-than-I-thought place (you know that one). So I got the "how are you?" and "you are doing so well" and "I cannot imagine" kind looks and thought about those questions a bit from their perspective. I ache.

I'm working my way through the Friday Night Lights (break in writing to flip to the library website to request the next DVD) and one character vowed yesterday while I was watching and rocking my baby to sleep in the sling (my best trick right now): "serious as cancer." We're in the middle of a dance with a disease so universally feared it has become cliche. So deep in our dance that it is the familiar cadence of our lives, a continual presence that neither Nathan nor I can get our minds around, so we just enjoy a bit of dark humor and arrange our who-gets-which-kid-at-which-hospital-today schedules and occasionally hold each other and weep.

Because it is so darkdarkdark in the fearsome place, instead I mostly obsess about the details. Reuben lost all the eyelashes from the sweet sweep of his right eyelid this week (3 long and four medium lashes left on the left; I just sneaked in to his sleeping self to count them) and I am haunted by this development. I tell everyone I meet (nurses, doctors, friends: "How's Reuben?" "Pretty good; he liked his blood transfusion very much this week [blessed red cells! donate magic blood, please!] but he lost all of his eyelashes and I am sad.") and most don't really know what to do with that little prize of information. I think I am just trying to find something concrete that is happening. I adore that kid and still think his every curve and smile and sob is scrumptious and am not so shallow as to think his eyelashes are important in whatever shallow way you may be thinking of. But their slow disappearance visibly marks the progression of this battle, better than his growing medical file or the little 3-ring-binder whose organization may be a losing battle of a smaller sort (not that the cancer is a losing battle right now because it is not and I'm not saying that in a desperate hope sort of way. That sucker is shrinking). It takes all of my considerable cerebral power to calmly participate in the systematic poisoning of my baby's growing cells. To judge whether a 70% or a 60% dose is the right balance of sobbing nausea and food-strike mouth sores with shrinking and hardening of this synovial sarcoma (such cold words for those sinister thoughtless military cells buried in such soft and sweet and purposeful flesh). And these details mark for me, amid the usual baby life of diaper changes and trying the first July peach and admiring fat knees and tan little feet (they stick out during stroller rides), what is happening. The poisoned lines on his fingernails.And the progression fromtotoI want this cancer to be a life-stopping event, as in "All I do is hold my darling baby and soak up these seconds!" But what I've learned most of all is that life goes on. It does.

In this way: I think I'm finally past my pathological grief over my dad's death, 5 years ago. From stupid cancer. A post for another day.

But also in this way: I interrupted the writing of this post to deal with the waking of the household: the 7 year old sobbing because gift bags from last night's party were in front of her dresser drawer and she wanted to get dressed, to finally make good on my threats to take the 11 year old's door off the hinges if she slammed it one more time, to start yet another load of laundry because the visiting cousin (whose bags were lost by the airline) had nothing to wear and certain dresser drawers were empty... But life going on in this way is good, too, because you have to just get up and deal with it.

And that, my friends, is how I'm feeling today.


Sherry said...

Val, Thanks for sharing your thoughts! Please let me know if there is anything we can do for you. I definitely can't understand fully from the parent's view, but as a patient it is awful too...your description brings back memories and tears. We love you!

cfm said...

grrrr...stuuupid cancer is right...but my how perfectly delightful that baby is...we miss you

Snippety Gibbet said...

Such sweet baby pictures. He's such a beautiful little boy. Of course, all your kids are beautiful.

vimahi said...

Your baby boy is so sweet. I cried looking at the pictures. I don't think "lashes" are shallow at all - I feel your pain

Alyssa said...

I can't say I understand... but I care and I hold your little boy in my heart every day.

you are amazing

Meg said...

Love you Val.

mimi said...

my wonderful valerie, i'm back reading your blog after reading nathan's note on facebook today. i'm so crushed at all that's happening to you guys. i have chill after chill reading your post. all this before dawn! all this before the day even begins! my dearest valerie... i'll keep you guys in my prayers. i love you so much. stay strong. much much love.