Wednesday, August 27, 2008

Ouch...that didn't hurt enough

Allergic rhinitis, or hayfever, is a common problem in the developed world. It's relatively rare in countries with poorer sanitation, where residents are exposed to many more bacteria, viruses, and especially parasites. There is a theory that our lack of exposure to virulent pathogens encourages our immune systems to hyper-respond to normal, harmless stimuli. I'm not sure if it's gotten past the theoretical stage in terms of scientific research, but it makes sense to me. I did see one solicitation for people with hayfever (like me) to willingly infect themselves with anywhere between 10 and 100 hookworms to see at what point hayfever symptoms improve. I'm guessing you'd have to fork out a lot of cash, even to those poor college students, to get many to sign up for that one.

So I have a new theory, sort of tandem to this. Fibromyalgia is a disorder of varying severity whose sufferers experience much more pain than non-sufferers at a variety of stimuli. If you gently but firmly press on a trigger point of a FM patient, they will experience pain, even though you or I wouldn't. It's a difficult disorder to treat, and certainly even more difficult to have. There's been a varying amount of acceptance in the medical community, but more recently PET scanning images of the brain have well demonstrated objective evidence of these subjective complaints.

All too often recently, I realize how little I use my physical body. I'm out of shape. I drive everywhere. I sit at work. I sit at home. I do light gardening, and if I wasn't still lugging around a 38.5 pound (go, Henry!) child I'm quite certain I'd have no upper body strength at all. Knitting needles don't count as weightlifting. I wouldn't say I'm a wimp, but on a 1-10 scale of who can handle the most pain, I'd give me about a 4. So when I read about women in other countries who squat to deliver a baby in the rice patty, then strap them on and keep working, I'm not sure we're made of the same protoplasm. I barely took the stairs for days after my first kid.

What can explain the difference? Perhaps the pain centers in our brains are scanning our nerves for pain sensations, to create a scale of sorts: no pain, hurts a little, hurts a lot. And when we don't enounter much "hurts a lot", the scale gets ratcheted down.

So, just like hayfever is a result of a babied immune system, could fibromyalgia be the result of our relative "lap of luxury" living? Do people raised in countries where kids do hard labor by the age of 8 experience fibromyalgia?

I need to find a ditch for my kids to dig.

Friday, August 22, 2008

Pelvic Dyslexia

A patient called in today to let us know she wouldn't be needing the referral to the GYN afterall.

She had decided she didn't want a DUI for her uterus.

Thursday, August 21, 2008

Don't Burn the Day

LeRoi Moore passed away suddenly on August 19, from complications stemming from an earlier ATV accident this summer. He was one of 5 original band members of the Dave Matthews Band. He played a variety of wind instruments, with a number of notable and memorable solos over the many years of recording and touring.

I was lucky enough to see him perform a few times. Notably, his last public performance before his accident was the summer concert I attended this year. His falsetto singing to "Sledgehammer" was a highlight.

He will be greatly missed.

What point could there be troubling?
Head down wondering what will become of me?
Why concern "WHAT" we cannot see
But no reason to abandon it
The time is short but that's all right
Maybe I'll go in the middle of the night
Take your hands from your eyes, my love
All good things must come to an end some time
But don't burn the day away
Don't burn the day away...

Come sister, my brother
Shake up your bones, shake up your feet
I'm saying open up
And let the rain come flooding in
Wash out this tired notion
That the best is yet to come
But while you're dancing on the ground
Don't think of when you're gone


Monday, August 18, 2008

How time flies...

10 years ago today I crossed a major threshhold in life. With the help of quite a bit of pitocin, and a poorly functioning epidural, I became a mother.

Happy birthday, dear one. I can't believe how big you are.

Friday, August 15, 2008

It's a gas gas gas

Have you ever had a lumbar puncture? Small needle with numbing medicine, followed by big needle, in between your vertebrae on your low back. On the scale of things not to have done to your body, it actually ranks pretty low. I think the creep-out factor may actually outweigh the true pain experienced. Still, not a great ride.

Sister Smak had meningococcal meningitis over 10 years ago. I asked her how bad the LP hurt. She said she didn't even notice it, the pain from the meningitis was so awful.

Suffering, whether physical pain, stress, emotional distress, is a gas. It expands to fill the space provided. If you've got a bad cold, sometimes the misery is overwhelming. If you've got a bad cold and you're a resident on night float, it's like a cruel joke. If you've got a bad cold on night float and you're pregnant with twins....well, that's just not fair. But it doesn't make us feel any less miserable the next time a bad cold comes around.

Why is that? How does it take over all available space? Why can't you say to yourself, "My back hurts today. However, just a few months ago my back hurt from lying in a hospital pullout bed while my son was getting chemo, so really, it's not so bad." I do say that to myself, and it changes my perspective, but for so brief a period of time. Why am I such a whiner? Is it a characteristic of humanity, or life in America in 2008?

So this post was supposed to be about suffering, and how I'm tired of complaining about mine. Instead, now I'm complaining about complaining about suffering. Classic.

Where I was trying to go with this is here: at any time in our lives, there are things to worry or complain about. True, the last few months have been extraordinary for me, and a bit of self-reflective pity was not uncalled for. But things are looking up now, and I need to move on. My suffering fills my box, as does yours.

Wednesday, August 13, 2008

On Death and Dying

We don't talk about it enough in this country. I'm fairly ignorant to sociology, so I don't know if other countries/cultures do, but my sense is that Americans are pretty gifted on the denial scale.

I think that it's healthy to think about, at least more than most of us do. Keeps you honest. It's good to realize that you really aren't going to be here for forever, and that you might not be here for as long as you think that you are. It also helps with the whole Carpe Diem thing, especially when we seem to be programmed to want to spend too much time on our collective arse.

If I sit and think, really think, about my own death, for 5 minutes, it changes my whole day. In some ways good, in some not so good (but I think that's probably more related to the fact that I don't do it often enough.) When your child has cancer, you're forced to think about his death. Over and over and over. Definitely changes the day.

Last week I couldn't stop thinking about it. It was as if someone was standing behind me all day long, interrupting me every 30 minutes or so to say, "You know, he still might die." This week it's down to a few times a day, allowing me to relax much more.

Strange, though. With all of the pondering on mortality and death over the last 9 months, I continue with my illusion of control. I find that if I just begin to consider the death of one of my other children, I have the same sense of utter panic and disbelief that I remember from when Henry was diagnosed. I know that the possibility of losing them has yet to enter my consciousness. Not that I'm inviting it in. But isn't it interesting to compartmentalize so much?

OK, weird post, not sure what I think about it yet. Really, I'm doing better. But last week sucked.

Sunday, August 10, 2008


Henry had his 3 month MRI last week. It looked good.

The despair that I would have experienced had the news been otherwise has not been matched by my emotional response to the best news that I could have hoped for. I expected a bit of elation, but it was only relief that settled in.

It feels akin to a great first half of a soccer match. Didn't really expect to do so well, but sure as hell hoped we would. A brief woohoo!, and then back to being nervous about losing. The other team had the advantage going in.

Aah, the constant sports analogies in my head. From someone who doesn't watch sports. Guess there's not much comparable in knitting.

Such conflicting emotions. How can I not be elated with victory? How can I not be full of glee and hope at every moment? I feel guilty when I see other children and families who have not been so lucky...what would they give to be where I am today, instead of at their daughter's funeral?

Melancholy, with intervening moments of hope, laughter, elation. I'd like to do better, but right now I can't.

Saturday, August 2, 2008

Dr. Smak's first poll

We've all encountered lazy people. But I've got you all beat. I had an amazing comment from an on call phone call recently. She blew me away.

I want to hear about the laziest person you've met. Fill in the blank:

"I'm too lazy to..."

If you're a doc, feel free to give a patient story. If you're not, share anyway! I'm quite certain that lazy people end up bothering all sorts of friends, family members, and the general public. If you want to, you can make it about yourself. But don't admit to it.

I'll post mine in a few days.

Friday, August 1, 2008


I've said before that I don't do (capital S) Sick kids well. Bothers me pretty deep down.

For obvious reasons it's been tougher to avoid lately. Just to start with, I've got my very own. We've gotten to know a few families pretty well from our interrment at Hopkins. And we've gotten to know a few families, virtually, from the internet community.

When your tumor type has a one in four chance of cure, it's not surprising that some of the kids that you meet don't do well. It's heartbreaking. And terrifying.

Last week a little boy Henry's age relapsed. He had his stem cell transplant within a week of Henry's first. He's been feeling great. Hair coming back in, eating well, very active. But it's back, seven tumors on the spine. They're looking for options, but I don't think they have many.

Yesterday a little girl Henry's age, with anaplasia as Henry has, failed chemotherapy. The tumors have grown even during treatment. She entered the hospital for chemo, and is leaving with hospice. I can feel the ache in her mother's chest in my own, but I know it's just a hint of the real deal.

I want so badly to read success stories, to see kids who have made it. There is one that I follow, entering kindergarten in just one week, over a year out and thriving. He's not yet out of the woods, but is doing well. So I follow these stories, looking for good news, and then the bad news comes. I feel like a rubbernecker on the highway, surveying the gruesome scene for the sobbing parent, the blood on the road.

Sometimes I think I can't look away. I care too much about what happens to these kids.

But today I think I decided I have to. These two relapses have hit me hard. I'm not sleeping well. I'm tearful again. I'm thinking about it whenever my mind isn't actively engaged.

I see some parents embrace the pediatric cancer community. They become activists, fundraisers, lobby congress, speak publicly. That won't be me. As soon as I am able, I will flee. To see the pain, the loss, the disability that these families go rips me open every time. If we are the lucky ones, and Henry makes it through, I don't think I'll be able to look it in the face over and over. If things don't go well, I know I won't. At times that makes me feel weak...that I should give back to this community that has so embraced me and given all it could to my family. But I'm just going to have to find another way to give back.

This isn't the place for me.