Friday, April 25, 2008

Stay

I have a close friend who says that there's nothing in life that can't be related to a Seinfeld episode. I might argue that the same could be said of Dave Matthews' lyrics.

We're home from Baltimore, with no scheduled hospitalizations. As is always the case, there's lots more of this journey to walk. But for now, I just want to waste time...

Wasting time
Let the hours roll by
Doing nothing for the fun
Little taste of the good life
Whether right or wrong
Makes us want to stay stay stay stay for awhile...
Later on
The sun began to fade
Then the clouds rolled over our heads
And it began to rain
Oh we were dancing mouths open
Splashing tongue taste
For a moment this good time would never end
You and me you and me
Just wasting time

Sunday, April 13, 2008

6 months

6 months ago today our family piled in the minivan to go to my daughter's soccer game, as we so often did. Henry had been throwing up on and off for a couple of weeks. Actually, we all had, but he seemed to be having more trouble shaking it. He was acting like he didn't feel well and I was hoping that a change of scenery would help him get over it.

He didn't want to walk on the field. I was of course carrying the requisite chairs, snacks, cameras, and water bottles, and couldn't carry him. So I held his hand and half-dragged him, fussing, to our seating area. I let go of his hand to set up the chairs, and saw it. He walked straight into the ground. His cerebellum wasn't working, and it was instantly obvious to me. "Ohmygodhehasabraintumor" was the instantaneous thought in my mind, gone as soon as it came.

My husband, who had been more worried about his vomiting than I had been, saw the look on my face. "We need to go to the hospital now," I said.

In the lobby, my husband said, "What are you afraid of?"

"A brain tumor," I said. "But there's no way it's a brain tumor."

Except that it was. Our ER doc, efficient and gentle, broke the news within an hour. "There's a mass under his tentorium."

"What's a tentorium?" I asked. I would have of course know the answer if it wasn't my son's that we were talking about. He explained again, without the medical-ese.

"Are you saying that my son has a brain tumor?"

And the answer came, "Yes."



Six months. What a lot has happened, in six months. Two surgeries. Nine admissions. Five rounds of chemotherapy. Two stem-cell transplants. Four MRIs. Ninety days in the hospital. Countless doctor's visits.

But what a lot that has not happened. There are so many potholes on this road, things that probably don't make a difference in the long run, but definitely make life more difficult. Posterior fossa syndrome. Central line infections. Refeeding problems. Sepsis. Shunts. We had our own potholes, mainly our fever admissions, but after hearing the trials of other families, we realize how lucky we have been. How strong Henry's body is.

Tomorrow, almost six months to the day, he'll be discharged from his last chemotherapy admission.

How am I different, after six months? I'll probably never even know...I do know that I have more hope now than I have had for most of those six months. I've never been what you would call an optimist. I can't hide my head in the sand, as much as I would like to at times, and I can't sugarcoat reality for myself either. A realist. I haven't always had hope about this cancer, but it feels really good to have it back. Hope doesn't always take the stage of my blog posts - my dark times tend to come out. But I have a lot of hope...

And Henry...he is a totally different child than he was six months ago. That child is gone forever, but only in the way that all three year olds are different people six months later. He has grown so much, matured so much, learned so much in that time. He's gone from being an older toddler to a younger preschooler. I'm so proud of him.

Tonight I don't want to worry about where things will be six months from now. I just want to remember what we've accomplished in six months.

Here's to you, Henry. You've come a long way, baby.

Wednesday, April 9, 2008

Object Permanence

I have a feeling that this will be a strange post. Bear with me.

After Henry's diagnosis, I had an unshakable feeling that I had been duped. His cancer had been there growing, for some time, and I hadn't known. Of course, no one knew. But I had (have?) a sense that someone knew...the universe perhaps?...while I did not. I have never struggled with the 'why' of his cancer (though that may be yet to come.) To me, his cancer just is, the way an earthquake just is.

Then, the universe turned into a pair of pants. I was at Old Navy, months before his diagnosis. I picked up a pair of powder blue sweats. Ugly, but a bargain. I thought, "Maybe he'll get just a few wears out of these, besides, what a bargain!"

He wore them a lot during his first round of chemo. They were soft, easy to get on and off, and comfy in bed. Still ugly, but who cared.

But I felt like they knew. Like at some strange quantum physics level, those pants already knew all the times he was going to wear them. I could remember picking them up from the bargain bin at Old Navy, fingering them, trying to decide whether to buy them or not. I could only imagine my horror if on that day I could see how they would be used. I didn't know. Did they?

This happened many more times. This new pair of shoes. I put them on for the first time the morning we took him to the hospital for dizziness. Neither I nor they came home for a week. Did they know, back when I ordered them off the internet with my free shipping coupon, that they would be sitting in the PICU while I sobbed? While I was told that there was a great probability that my child would die within a few years? While I held an emesis basin for him to vomit in over and over and over?

It's quieted down now, my conversation with the universe. But every so often, it pipes up again. These new shoes that I buy...will I be wearing them the day that the oncologist tells us his cancer is back? This watch, that I have worn every day since my husband gave it to me when I graduated from medical school, does it know what will happen? Will this sweater that I am knitting him come back to me tattered and torn from his playing in the woods in a year, just as he outgrows it, cancer-free?

If they know, they can't tell me.

Saturday, April 5, 2008

It's not easy being green

I'm almost five years into my practice. I feel like I'm a better doctor than I was five years ago. I hope to be better still in five years, but I suspect the learning curve won't be as steep.

When I started practicing, I thought a lot about being a new doc. I told myself that I would have no problem with a family member seeing a fresh-from-training doctor. I told myself it was okay that I was learning how to be a doctor on real people; it's how we all learn to do it.

Now that I'm five years out, I think I feel differently. If my sister wanted to take her healthy child to a new doc for checkups, so be it. But if I had a sick or aging family member that started with a green PCP, I might speak up.

Enter Henry's oncologist. I don't remember if it was the first or second time we met him that I asked how long he'd been practicing. This was October, and his fellowship had ended just a few months prior. He was as green as green got.

But, from the first time we met him immediately trusted him. And I've never regretted working with him as Henry's attending oncologist.

Which makes me hope, that even being green, some of my patients felt the same way about me.

Friday, April 4, 2008

Ooh! Ooh!! Pick me! Pick me!!

A contest, courtesy of Dr. David.

Win my socks!

Actually, they are a new pair of socks just like my socks. Who would want my old socks?

Wednesday, April 2, 2008

A conversation I never expected to have with my husband

Dr. Smak: So how was she last night? I told you she'd be good....

Mr. Smak: Oh, she was good. She was really good...


Open marriage? No, just discussing how well the night nurse managed the beeping IV pole.