Thursday, April 21, 2005

Fighting the good fight 

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the beginning

The fight begins

I don't remember much about my last semester in college. I don't even remember what classes I took, besides biochemistry. I think I pulled away from my friends slightly. They didn't really know how to deal with what I was going through, and I found their petty internal bickering and over dramatic dating issues annoying. My tolerance for bullshit went WAY down. One of my friends was dating a guy who was emotionally abusive, and eventually cheated on her. She would AGONIZE over this...HE LOOOOOVED her, blah blah blah. I couldn't tolerate it, the pettiness of it. DONT' YOU KNOW WHAT I'M GOING THROUGH? AND YOU'RE WHINING ABOUT THIS GUY????

I went home on the weekends alot, to help out my parents and to see my brother. His first round of chemo began soon after his diagnosis. He spent a lot of time napping on the couch. A had been keeping his hair in a buzz cut for years, so it wasn't immediately apparent that he was losing his hair. But if you came up behind him and pulled on a few hairs, they would come out. I teased him about it. "pick pick pick! like a monkey!" "stop it!!!" Again, it was how we coped.

In spite of it all, our spirits were high. All tests were pointing to a good recovery. His leukemia was responding to the treatment, and by the time his first round was over, there were no detectable cancer cells in the samples. A was going to beat it. He had to beat it. Of course he would beat it.

I finished school in December and moved back home. I think I filled out some applications for jobs in labs at UPMC, but I didn't have any immediate plans. My grad school applications were in already.

After a few weeks, A's body recovered enough that his normal activities resumed. He and E would go hanging out with their friends, causing trouble, the usual. He tired easily, though. That Christmas, we celebrated all being together. A got me a margarita set: 4 glasses, salt, mix, even chips and salsa. I don't remember what else I got, but I remember that margarita set. He was so proud of the gift.

Christmas night, E and A went to hang out with their friends and C, A's girlfriend. Probably to smoke and drink, and then terrorize the staff at Denny's for awhile. But they came home a little earlier than usual. A's face, well, once side of it, had gone numb. Weird. He kept flicking his cheek with his fingers. "I can't feel it!"

Hmmm...maybe a weirdo side effect of the chemo? He had another doctor's appointment the next day, so we'd solve that mystery then. It was unsettling, though.

But the doctor's were just as puzzled as we were. And worse of all, the numbness seemed to be spreading. Soon it was affecting the other side of his face as well, then moving to his torso. A's speech was affected, because he couldn't move his lips properly. More tests. Palsy? Bell's Palsy? Every time a potential diagnosis would come down, mom and I would hit the internet and try to find as much info as we could. After the new year, A was checked into the hospital. And we finally had a diagnosis: this.

It is a disease where your immune system attacks the insulation around your nerves. It starts at one end of your body (usually the feet) and works it's way to the other. There was a spectrum of severity, from partial to full paralysis. It was rarly fatal, most cases were due to patients not getting hooked up to a respirator in time, since the condition could affect the nerves controlling the lungs. But it isn't permanent. Usually, after a period of time, the insulation would repair and movement and feeling would be restored. A moderately famous celebrity had this.

There was no cure, but there was some treatment where they pumped him full of gamma globulins. But his numbness kept spreading.

I remember sitting in the hospital with him in early January. He could still get around, and we joked about how you have to give up any sense of modesty and pride when you're in a hospital. You just have to provide body fluids whenever and to whoever asked.

My graduation present from my aunt and uncle was a trip to visit them in NY, and I was leaving soon. I told him that he'd better kick this shit before I got back. He said if we went into the city to go to Chinatown and get him some comic books. I said I'd do my best. I gave him a hug and said I'd see him in a week.

That was the last day I heard my brother's voice.

While I was in NY, going to see broadway musicals and opera at the Met, the disease kept up it's course of destruction through my brother's already weakened body. A few days after I left, he had to be intubated. A few days after that, they put in a trach (not sure of my spelling). A had lost the ability to breath on his own.

He couldn't walk.

He couldn't move his arms.

He couldn't FEEL his body.

Even the muscles controling the pupils of his eyes were affected. It was the worst case of the disease any of the doctors there had ever seen. They searched and searched for any kind of connection between the leukemia and the disease, but found nothing. It was just two freak accidents that converged on my brother.

By the time I got back from NY, he was already in neurointensive care. He had lost all muscle ability, except two: he could still shake his head, and he could wiggle his legs. My brother
was a prisoner in his own body. And my family became a prisoner of the hospital.

Thus started our schedule. My mother would go sit with him during the day, my father would take over after work in the evenings. I was the sub, and would go in whenever either one needed a break. I also took care of communications. People were always stopping by the house, dropping off food. We survived on a steady diet of pot roast and potatoes. It was nice of them (mostly people from the church) but you'd think they would have cooridinated the menu better.

Days blended into each other. Time at the hospital was slow. Doctors going in and out: neurologist, optomistrists, dermitologists. A's leukemia was coming back, he needed another round of chemo. Could he handle it? There was no choice, he had to. So another port was put in to feed the chemo in. He had ports all over his body, the tubing of fluids going in and out, keeping him alive. Beeps and blips on a monitor above his bed played a constant background music.

We tried many things to keep him entertained. Mom and I both read to him. We tried earphones and a cd player, but he didnt' like the earphones. I think they shut him off further from the world. All he could do was hear: he couldn't see or feel. Hearing the every day sounds around him reminded him he was alive. So we got a stereo and played music for him that way. My dad developed a way of communicating. A would wiggle his legs and shake his head when he needed something. It was usually one of about 5 things. Dad wrote them down on a piece of paper:

Do you need more pain medicine?

Do you need more adavan? (it was a drug that calmed him, not sure on the spelling)

Are you itchy?

Do you need a nurse?

Do you want the music on/off?

Then for more specific requests, we'd slowly read off the alphabet until he shook his head a letter, and slowly spelled out his request.

How did we survive it? I hated it. I hated every day in that hospital. I hated how it sucked up our lives. I hated the world for putting my brother through it.

Worse, I hated my brother. Like it was his fault. I hated when his head was itchy. Because his head was oily and the skin just flaked off. I wanted to yell at him GET UP!!! GET BETTER!!! STOP DOING THIS TO US!!!!

I hated myself for thinking those thoughts.

I hated the smell of the room. I don't think I will ever forget that smell.

We were all in this hazy purgatory. Hospital eat sleep hospital eat sleep hospital eat sleep. Seems like it went on forever.

After his second round of chemo started, mom noticed a rash on A's stomach. It was yeast. A yeast infection. On his stomach. Because the chemo was killing off his immune system. It was our first sign of things to come.