Thursday, November 13, 2008

Life As We Know It...

Right now, there are toys covering every square inch of space in the living room, and I'm honestly thrilled about it. The only way that particular spread could possibly happen is by the whim and effort of a determined baby, and that's a hopeful sign. Last week, and early this week, he would not willingly move or sit on the ground because of the pain. He'd play quietly with a couple of his cups, or something like that, but that would be about it. If he's really moving around - like a normal kid - that makes me feel a bit better about the whole thing.

Granted, my house is a complete and abject mess. There are dishes piled up in the sink. (Not mine, because I haven't eaten a meal in the house since lunch on Monday, and it's Thursday night.) There is laundry in several different places, and none of our bags have been unpacked from the hospital stay. The bathroom has not been cleaned in a week, although I did clean the kitchen last Thursday night when I stayed over from the hospital. The rug has been vaccuumed (our little area rug), but none of the other floors have been cleaned. There is a thick layer of dust over everything, and numerous sticky spots on floors and tables and countertops. The lawn is covered with leaves, and dead flowers hang from unpruned plants in the garden. It's frustrating to me, because I don't feel like doing a goshdarned thing when I get home from school.

I'm a little concerned about this cough that I picked up at the hospital. I've been a lifelong asthmatic, although I'm starting to think that it's a different form of asthma and breathing difficulties than what I've been treated for. With luck, the new asthma doctor that I'm seeing on Tuesday will be able to help me find a more appropriate management plan. But, my cough right now is concerning to me. It's a tightness across my chest, which leads to a wracking, painful, useless (because it doesn't move anything around or help me at all) cough. I'm almost positive, at this point, that it's turned into bronchitis. I'm afraid, at this point, that it's trending towards walking pneumonia.

Wouldn't that be perfect - trading my son's hospital bed for my own.

I'm continuing to get frustrated and depressed at the progress of The Boy's treatment and development. The cancer thing is starting to feel more and more like this great Sisyphusian stone: everything we think that we've rolled the stone up the hill, the gods knock it back down again and force us to start over. I'm honestly happy that this surgery is done. It feels like a milestone: it feels like, for the first time, The Boy is cancer-free. Real life then intrudes. How long is it going to be before we spend another week at the hospital, because he gets sick? How long is it going to be before we're sitting in a closet at the emergency room again for 8 hours as The Boy gets fluids and antibiotics? How long is it going to be before we have a scan that the doctors are "concerned" about?

It is never going to end. I understand that. Even when the cancer is over, we're going to have Damocles' sword hanging over our heads: we'll have a healthy, beautiful baby boy that can be struck down at a moment's notice, with no symptoms or warning. This cancer could recur suddenly and mercilessly. This cancer could travel, mutate, spread.

Am I a bad person, to have such a vivid imagination? Am I wrong to be afraid that I'm going to spend the majority of the rest of my son's short life in one hospital after another? ...going from one round of surgery to another? ...taking test after test after test and scan after scan after scan?

There is no way in hell that I should outlive my son.

I know that his histologies and pathologies are favorable, and there's a greater-than-likely chance that, once he's done with his chemotherapy, he will remain cancer free until he dies in bed at the ripe old age of 96, hopefully in bed with a 25-year-old stewardess. I know that there are plenty of people who have had what he had, at younger and older ages, with more severe damages and treatments, that have survived.

It's frustrating to me. "Have survived" and "living a normal life" are not things that The Boy should have to strive for. Those should be rights. He shouldn't have to live with this hanging over his head. He shouldn't have to live with bimonthly (or so) CT scans and ultrasounds for the rest of his life.

More later. Gotta go - just ran upstairs to grab The Boy so The Wife can actually sleep tonight.

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