Thursday, May 29, 2008

What We Want

I thought this was a beautiful poem...


What We Want

by Linda Pastan

What we want
is never simple.
We move among the things
we thought we wanted:
a face, a room, an open book
and these things bear our names—
now they want us.
But what we want appears
in dreams, wearing disguises.
We fall past,
holding out our arms
and in the morning
our arms ache.
We don't remember the dream,
but the dream remembers us.
It is there all day
as an animal is there
under the table,
as the stars are there.

Sunday, May 25, 2008

Cheaper than therapy

My husband alerted me to this article about the psychiatric benefits of blogging. I guess I'm narcissistic enough to need to blog instead of just writing a diary.

I process my life ahead of schedule. I'm not sure if this is a good thing or a bad thing, but it's the way my mind works. Three months ago, during Henry's first stem cell transplant, I processed our radiation decision. I didn't make the decision then, but I walked the paths that I need to walk in order to make a decision.

Henry begins radiation in two weeks. I think I'm at peace with what we have decided to do.

Last week I began processing his relapse. It was a very dark few days for me.

The difference is of course that he may not relapse. He may be cured. So I may have processed for naught. But I couldn't stop myself. It's almost like a psychological tic, I can hold off for so long but I just know that I'm going to give in and do it eventually.

Anyway, it appears to be over, at least for now. Right now he's racing his tricycle all over the court, screaming "You can't catch me!" Which I need to go try to do.

But I promised you all a picture a few months ago, and this morning got it.

Saturday, May 17, 2008

I frickin' love spring



There is little that makes my heart sing like a warm sunny spring day, a trip to the nursery, and a few hours with my hands in the dirt.





Friday, May 16, 2008

Facial Recognition


If you could change one thing about yourself, what would it be?

For me, the answer is easy. I am absolutely terrible at facial recognition.

(Sidebar - this is kind of a trick question. I'm a strong believer that there is a flip side of the coin for every trait/foible that we have and that changing one, even an undesirable one, could have unforseen consequences....so I guess what I'm saying is that in my fantasy world where I could theoretically upload Facial Recognition Software to my brain like on The Matrix, after great deliberation I would very reluctantly decline. But if facial recognition were something important to No Child Left Behind, I'm quite sure that I would qualify for a learning disability.)

I'm not sure I realized how bad I was until my eldest daughter was talking. At age 3 she recognized people better than I did. We'd be in the grocery store and she would say "That's Jenny's dad." I would soothingly say, "Oh, ok honey" and not believe her. But she was always right. And continues to be, to this day. "You see that lady there, Mom? That's Jason's mom, he played on my soccer team three years ago." I've gotten to the point now that I treat her like crib notes when we go to school functions..."Who's dad is that? He looks vaguely familiar...and which one is Scott's little sister?"

I can literally spend an hour chatting with someone new at a gathering, and see them not three days later without recognizing them. If you were to ask me what we talked about, all that is still there. But the memory of their face has exited my brain. It can be embarassing at times, particularly at work. It's more than once that I've been seeing a new child, looked at the parent and said "You look familiar" to which they reply "You've been treating me for 6 months." Ouch.

When Henry was in the middle of his 4th round of chemotherapy, he was visually unrecognizable to me. His face swollen, his lips bloody, his head bald, his voice hoarse...of course, I knew he was mine. But the knowing was a very cognitive thing. I kept looking at him, looking for something to tell me that it really was Henry, my son, lying in that bed. The emotional connection never broke, of course, but I could feel my mind searching for visual cues to tell me that it was him. It was the strangest sensation, like I was an animal in the wild, and could hear my young calling for me, but just couldn't find him. I searched his face again and again.

What really bothered me was that I knew that had I not been there all along, I wouldn't recognize him. How could I not know that he was mine? If you lined him up with 10 other deathly ill boys, I couldn't have picked him out. It bothered me deeply...I was his mother, and I could not see him there in front of me.

As he started to recover, it was the eyes first. His smile looked so distorted, but even with swollen eyes I could see his expressions. Henry's expressions. My eyes trained on to them, like when you're in a foreign country and you see a sign printed in English. It was such a visceral relief.

I miss his hair, but it's ok. The eyelashes are on their way back in (Yah!). But I hope to never feel that searching again.

Thursday, May 15, 2008

Wow, cancer sucks.

Buy more shoes.



I'd marry these it weren't for my husband.

For those of you who have been waiting as long as I have, Zappos now carries Merrells too.

Wednesday, May 14, 2008

McGurk Effect

Those crazy guys in the 70s!

Check out this really weird phenomenon. The first time you watch it, you will hear "da da". Watch it with your eyes closed, and it's "ba ba".

Bizarre.

Tuesday, May 13, 2008

Mommy Dearest



Until a month ago, I'd never had a facial. I'm not sure how I missed the experience up to now, but it's probably a combo of lack of money and lack of time. Medical school and 3 kids will do both of those things to you.

A dear friend gave me a gift certificate to a fancy salon near our apartment during our extended stay near the hospital. I took great pleasure in viewing the 'menu' of the salon, and finally decided to go for it.

I may have found the origins of schizophrenia.

The experience overwhelms your senses with pleasures: soft relaxing music, mood lighting, pleasant scents. Somehow a glass of chilled white wine ends up in your hand. The technician comes in and talks to you like you're her best friend. There are scented oils, massaging, steam, lotions...

And then it all changes.

My new best friend turned into Mommy Dearest.
"Have your pores always been so big?"
"Don't you ever exfoliate?"
"Do you have rosacea?"
"Exactly what kind of product do you use?"
"This one is really big...I'm going to need the comedone extractor."



At this point, I was all but bound and gagged. My wrists were in some sort of handcuffs masquerading as a hand softeners. My eyes were covered with pads, ostensibly to protect them from the steam bath. And she came after me again and again with that torture instrument. I couldn't see where she would hit. She only quit after I started sneezing uncontrollably when she got too aggressive with my nose.

And then, it all started to fade away to peacefulness again. I could hear the eastern music. I could smell the lavender scented oils, feel the warmth of the bed I was reclining on. She was my friend again, at least long enough to recommend a 1.4 oz vial of something that cost $48 to make my pores less visible from the international space station. (Inwardly I scoffed but ended up buying it a week later, since my face really did look better.)

Since then, I haven't seen any small children recoiling in terror from my excessive dead skin or monstrous comedones. Whatever she did must have worked. I'll schedule my next one soon. This time, I'll drink two glasses of wine.

Monday, May 12, 2008

Anonymity


My real name is not Dr. Smak.

One day, right before I started this blog, my kids got raucous laughter out of calling me Mama Smak. We all had goofy names that day, I don't remember anyone else's, and I'm not even sure where mine came from. But I was trying to think of a good name for my blog, and it worked.

I started blogging to explore my life as a doctor. Being a doctor is, in many ways, very cool. You get to do cool stuff, you get to make a difference in people's lives, and you get paid pretty well for doing it. I love my job.

And to blog about my job, my highs and lows, laughter and tears, was fun. But I wanted to do it anonymously, for a number of reasons. The biggest was probably that I wanted to tell patient stories, and when you work in a very small town the way I do, many small details are recognizable to many people. And even if I changed patient information to disguise patients, I was afraid it would be easy in a small town to be the focus of misidentification. I also wanted the opportunity to be my casual, unprofessional self. If I want to let the blogosphere know how hilarious my celebrity boob twin is (pictured above), I don't want it to come up the next day in the exam room (not that it's happened already).

Henry's illness obviously changed my life, and changed my blog. Instead of cute stories, snarky comments, and medical news my readers are now subjected to the trials of life with a kid with cancer. Frankly, I'm surprised so many of you have hung on. I know this isn't exactly light entertaining reading anymore.

And I'm far from anonymous at this point. I've shown the blog to many friends and relatives. There are a number of easy ways for me to be 'found out', and I'm sure there are some real life readers I don't know about. Which doesn't really bother me. Actually, I'm much more protective of my Dr. Smak persona than my real one. What I am able to write on this blog is so much more naked, more raw than what I can express in my real life, except to my closest friends and family. A lot of people don't want to hear this stuff. And there are a lot of people, in my "real" life, I can think of whom I wouldn't want to read it.

What a strange new outlet, these blogs. Why does it help me to communicate my pain and confusion with people I don't know? For whatever reason, it does. So thank you again, to my readers, for giving me this outlet.

Sunday, May 11, 2008

Myanmar

100,000 people dead. Orphans, widows, mothers, fathers left behind.

My son fights for his life. Hundreds, maybe thousands of people following his story. Writing letters of encouragement. Sending gifts, money, prayers. For one child.

I couldn't find Myanmar on a map if I wanted to.

100,000 people dead. It crushes me if I let it.

It humbles me, yet again.

100,000 people. Dead.

Why him? Why them?

There is no reason.

Friday, May 9, 2008

Que sera sera

With each of my pregnancies I remember being most nervous from about 24 to 28 weeks. After the brief period of time I spent as a medical student in the NICU, those earliest of premies haunted me. Before 24 weeks you lost the baby. Devastating, but the decision has been made. The more time that goes by, the better the baby's outcomes. But there is that ugly gray zone, full of decisions that parents shouldn't have to make. Do you keep trying, hoping, pushing? Or do you let go?

I avoided the premie decision, but I am faced with my own decision that parents shouldn't have to make. Henry has done fabulously well with chemo, and his tumor has responded. But his tumor and cell type is very aggressive, and likely to return, at which point palliation is our only option. So now we face radiation.

Radiation does not share the sandbox well with little brains. For a three year old, full dose radiation leads to "neurologic devastation" in the words of our radiation oncologist. When they play with decreasing the doses, cancers recur more often.

So we're faced with any ugly decision. How much to use? Do we use any? We could do nothing, and hope for the best, with the thought that a victory would be a full one, and Henry's cognition intact. Or we could choose to give some lesser amount, and know that we are forcing upon him cognitive and behavioral challenges that we cannot predict, without any guarantee that we are improving his chances of survivial.

This is about where my brain enters a tailspin. How much is too much? How much is enough? If he was born a 'special needs' child, I wouldn't love him any less, so why does it pain me to think about him that way? What are my goals for him? What would his goals for himself be? What is the nature of self, and are we altering what makes Henry Henry?

Headache much?

What bothers me most is my wide vacillations in how I feel about the radiation. One hour I don't want it at all, que sera sera. The next I feel the opposite.

This is the first real treatment decision that we've had to make for Henry. It's a heavy one.

Tuesday, May 6, 2008

6 word Meme

Just like the rumor mill at work, I seem to be the last to hear about the blogosphere memes. Which works for me.

Some time ago, TBTAM tagged me with the latest and greatest meme. It's probably already died it's internet death, but I'm finally getting around to it. Without further ado...

Wow, cancer sucks. Buy more shoes.

These days, I'm limited in temporal perspective, so rather than 6 words that summarize my life, I chose six that summarize my last 6 months. I waited till I was in a more upbeat mood to compose it. For the record, there's been 5 new pair in the last month or so.

And now, a challenge to my blog-less readers...and there's a good number of you. Compose your own 6 word meme, and leave it in the comments.

Thursday, May 1, 2008

What I learned from living in Baltimore for 3 months

When you're at a stoplight, and the light turns green, count to three before proceeding into the intersection.

Slowly.