Sunday, December 28, 2008

Christmas

Henry had a setback two days before Christmas. It was heartbreaking, scary, and a big dose of reality. He's been feeling so amazingly well that we have resumed a largely normal lifestyle, only occasionally punctuated with life's stigmata of cancer: blood draws, hospice nurse visits, etc. I've begun to really appreciate the degree of denial that my brain is able to wrap around me, as it allows me to enjoy him more.

Henry suffered stroke-like symptoms. 48 hours later, fully resolved and with the tincture of time and some more clinical information we have settled on thinking that he likely had a seizure, caused by a small bleed in his brain that appears to have happened in the recent past. At the time of his stroke symptoms, we of course didn't know that less than two days later he'd be shooting nerf darts at his cousins as he ran around in the back yard laughing. The feeling I had was overwhelming: some amalgum of fear, loss, sorrow. I actually can't remember some of the time, but I recall crouching on the floor in my kitchen and sobbing.

How quickly the denial sets back in. How glad I am for it. For a few days I was paralyzed, unable even to fold laundry. Today I'm actively juggling again. Other than the episode above, today has been the worst part of Christmas for me. Putting away the tree, each of Henry's ornaments spoke to me, that next year when I put them on the tree he wouldn't be here.

Wednesday, December 17, 2008

Middling

I was born a middling one, and middling I remain,
Medium dull and medium bright and middling pretty plain.
The pleasant consolation for such a middling fate
Is that one finds so many friends in the same middling state.
--Marjorie Medary
She's my middling, as I am my mother's, as my mother was her mother's.

Such a middling. She has never asked for much; a piece of paper, an orange crayon, and a pair of scissors will occupy her for an hour. Her older sister could give courses on subtle attention-getting behavior (just wait till she's a teen!), but my middling doesn't need it.

I sat with her tonight until she fell asleep, at her request. She was not herself tonight, coping poorly with unanticipated challenges (like gravity). I figured she was tired, and put her to bed early. The footsteps I heard told me she didn't agree.

She didn't want to tell me why she was upset. She said, "I don't want to make you cry." And then she cried about Henry, about his cancer, about his impending demise and death. What can I tell her? My usual line of "It will all be better in the morning" didn't cut it. So I sat with her till she fell asleep.

The music coming from Henry's room was recently dug out of a drawer. It was the acoustic piano Christmas music that my husband and I played in the hospital room, just over seven years ago when my middling was born. In a very real sense, that was the last time she had our full attention. An older sister, a residency, a move, a baby brother, and then cancer. How can a middling compete?

She won't, I guess. That's not what middlings do.

Thursday, December 11, 2008

Im-pwessed

This is the word Henry used to describe how he felt about his older sister's Holiday concert at school.

I didn't even know he knew the word, let alone could spontaneously use it appropriately in a sentence.

His progress is remarkable. He feels the best that he's felt since before this all began. He's eating from four food groups (really, five, since Chick-Fil-A is it's own), sleeping all night, running, doing artwork, playing games, telling jokes. He wants to be with me, help me with my household duties, go places, meet new people, try new foods. He all but refuses to sit and watch TV - it's just too dull an activity.

I don't know this child.

At first, I resented it. It angered me, his beautiful and blossoming personality. This was something more that I would grow to love, and have to lose. Another piece of Henry that would be taken from me. Is it really better to have loved and lost?

I hope it is. I'm hopelessly in love with four year old Henry. I'm no longer angry, I'm grateful that I've gotten to know who he is now. This time with him is a time that I didn't expect to have. I expected the "palliative chemo" to help delay his headaches, his vomiting, his somnolence. I didn't in my wildest dreams expect it to give him back to me, whole.

I know it can't last. I know it won't. But I must say, I'm impwessed.

Tuesday, December 2, 2008

The Last to Know

We interupt this previously incredibly emotional and gut-wrenching blog to bring my physician colleagues a public service announcement.

Just like in middle school, I'm generally among the last to hear about things. So you may all already know about it.

(And yes, my life is just as schizophrenic as my blog. I wake up, cry through my shower, laugh through breakfast, make 4 phone calls on the way to work, tell a few hot flash jokes, see a few hours of patients, cry again, have lunch, do an I&D, see more patients, cry again, see more patients, come home, fold laundry, knit, drink wine, and laugh through Jon Stewart. Sorry you all are getting dragged through the muck with me.)

But this is exciting. The AMA has promoted something called PDRP, or Physician Data Restriction Program. It's sort of like the Do Not Call list for drug companies. Or not. They still call. BUT, they no longer have access to your prescribing information. (For those of you not in medicine, the pharmaceutical companies keep track of how often we prescribe what to see who they need to work, who they don't, and who is unworkable, like TBTAM.)

It's been going on for a few years. Not many docs have signed up. Maybe because we haven't heard about it? So there, now you've heard. Here's the link.

So I'm stoked. And signed up. Pfizer will only know for another month exactly how much Viagra I've been writing for.

Anyone else excited?