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fighting the good fight

Losing

Immediate aftermath

When you’re grieving, the best possible thing to do is keep yourself busy. You can only close yourself in your bedroom and hide under the covers crying for so long, until it becomes unhealthy. We all had our ways.

I got a job at a clinic at UPMC, theoretically as a research assistant, but realistically I was a glorified copy girl. Queen of the copier: collate, double sided, sort, oh yeah.

Mom and dad renovated the kitchen. New wall paper and flooring. The wall paper had lemons on it, so it became mine and my mom’s mission that summer to find as many decorative items with lemons on them as possible.

It was still hard. My mom would come to church with me on Sundays, and cry every time. Didn’t matter what the sermon was. I was getting quite sick of the church, as a matter of fact. Not my faith. I was mad at God, oh yes, FURIOUS, SCREAMING ANGRY TANTRUMS with God. But I still had my faith. But the church? I was annoyed at the people. At the “evil spirits” bullshit. At their phoney sympathetic faces. Once I moved to Atlanta, it was a long time before I sought out a church.

In august, it was time for me to move to atlanta to start grad school. I was of mixed emotions about it. I seriously considered delaying a year. I could do it. The school would hold my place. Everyone would understand. On the other hand, I needed to get away. Everything reminded me of my brother. In spite of our efforts to distract ourselves, the house still felt like a permanent funeral. It was time for me to go.

But it wasn’t easy. I didn’t know a soul in Atlanta, and I was renting a single apartment, so no roommate. All alone, in a strange new city….in the south where crazy people lived, and still very much in pain. I was very lonely. And I was spending far too much time by myself, on the couch, watching TV. I needed companionship. I needed to get out, meet people, do things.

I needed….a boyfriend?

HELL NO!

I needed A DOG!!!

Which is how Sadie-girl came into my life.

No, I didn’t order her online, and she didn’t come in a box! One month after moving to atlanta, I got in a car with a friend from grad school and her boyfriend (to help me decide, I was afraid I would want them all) and headed over to the Atlanta Humane Society.

She was just so calm in her cage, while all the other dogs barked their fool heads off and went nuts. I thought “she is the perfect size and temperment for me!” She was a year old, and her previous owners didn’t want her because she would run away from their yard.

Boy, did she have me fooled! Crazy dog didn’t sit down for a week after I brought her home! She was the perpetual motion dog! I eventually trained the laziness into her. Get up at 5am to take her out? NOT ME! Sleep in, dog!

I honestly don’t think I would have made it that first year without her. She forced to get out of my depressingly little apartment. To get exercise, to meet other dog people. She was there when I got home at the end of the day, and she was a good snuggler and tv-watching couch buddy.

She helped my family through that first year, too. I took her back north with me for both Thanksgiving and Christmas. Instead of spending those holidays our first year without A and missing that empty space at the table, we could focus on the novelty of having a very enthusiastic fuzzy new “child” running around. Sadie took our minds off of our loss. NOT that we forgot about A. But instead we focused on the happier memories, with Sadie at our feet, begging for scraps. (dammit, my dad taught her to bark for pieces of turkey. thank you, Dad, for teaching my dog to beg…loudly)

So some people may think I’m nuts for spoiling my dog and for fighting to keep her through my condo troubles. But I owe a lot to her royal sheddingness, so I will continue to treat her like a child, and DEFINATELY continue letting her lick my bowl after I have ice cream. I will also continue torturing her by smearing cream cheese on her nose.

The first anniversary was hard. I spent the day sitting on my balcony, crying. Also cried a week later, on his birthday.

The second anniversary was a little better. I had kicked an asshole to the curb, and spent it with my new friends (who I met when I finally went back to church, one of the BEST decisions I made in atlanta), who made me a spaghetti dinner and made sure my wine glass was always full.

The third anniversary was a little easier….and the forth easier still. Every year the pain gets a little easier to handle. Not that it goes away, it will NEVER go away.

I talk to my parents and E every year on the anniversary. We usually don’t say exactly WHY we’re calling, but we all know. My mom’s friends look out for her. She spent today sorting through stuff at my grandparent’s house (depressing) but then a friend of hers tookher out for dinner. My dad is spending a cold weekend in Ohio playing golf with some guys on their street. He offered not to go, but mom told him it was OK. They’re keeping busy.

I called E. He was at his bosses wedding (and that’s pretty fucked up, but that’s a WHOLE OTHER STORY). “so what’s up?” “what’s up? it’s the 23rd!” “ohhh….dammit! I wasn’t going to go to the wedding because of that! I totally forgot!” What a dork.

So it gets easier for all of us.

Today I was bound and determined to make it a good day. I had my brother’s birthday and mother’s day to shop for, so I told Kev: I need to go shopping. You are coming with me.
Shopping damage:

for my brother: a dvd called “neurotically yours” featuring Foamy. I’m also setting up a blog for him. I hope he keeps it!

for my mother: light summer slippers (sooo cute, bought myself a pair, too). “wash away your sins” bubble bath (kind of an inside joke), a fridge magnet that says “moms are like dads, only smarter”, and a patriotic bangly bracelet (she loves that stuff)

for Kev’s mom: “wash away your sins” hand soap. HA! she’ll get a kick out of that.

for ME!: a cook book for baking, aforementioned slippers, some kitchen gadgety utensils, a dozen bagels (mmm…baaaagels…), and…the BEST one: a pair of $150 Italian khakis that I got for $15!!!! SWEET! They’re a little long (Italian women must be really tall) but…$15!!!! I couldn’t legally NOT buy them!

Kev bought me lunch. And he’s been very sweet and attentive all day. Not that he’s usually NOT sweet and attentive, but he’s just been extra-so today. God, I love him. He’s helped me more than he knows. Just being a solid presence and always there for me. I don’t know what I’d do without him. Oops…tearing up a little…silly me

Sadie has been extra clingy the past few days. Unfortunate, since she’s shedding. Who knows why, but maybe she senses an extra need for cuddling? I’m going to think that, anyway. It’s certainly not because she’s hungry and sees the chips and salsa on the coffee table, that’s for sure.

Thank you all for reading through all of this, and for your kind comments. I didn’t reply to them because I was so focused on getting this all out. But I appreciate every virtual hug and sweet sentiments. Even though I’ve spent the past few days writing this all out, and getting very emotional about it, I haven’t spent the week moping. As is my habit, I have kept BUSY! Busy at work, and even better, busy COOKING! I updated the long neglected recipe site. Check it out until my “shameless plus.” I also added a little thumbnail flickr thingie, which so far only has ren fair pics, but I hope to add more soon.

I love you all

***P.S.****

If any of you have ANY questions about what I’ve posted the past few days, PLEASE feel free to ask. Clarifications, more details, more info about any of the people, I will be MORE than happy to clear things up. And I am totally OK with it. I’ve become very comfortable talking about my brother, and writing about him helped even more. So please, ask away!

Immediate Aftermath

ESC — Fri, 22 Apr 2005 16:45:00 +0000

fighting the good fight

Losing

We were quietly usherd to a nearby “greiving” room. It was a small room with comfy, plush furniture. A small part of my brain thought “this has been here the whole time! we were sleeping on hard couches!”

My brain was…pudding. I just couldn’t think. But we were all crying. Tissues! we need tissues! I found a box and passed it around. That became my job for the next week. I was tissue girl. It was something I could do, something to help, because otherwise, I felt so helpless.

After a few minutes, one of the nurses came in and asked if we would like to see A with all the IV’s, trach, and tubing removed. Everyone went but me. I couldn’t. That wasn’t my brother laying there anymore. It was his shell. In a few minutes, I was glad I didn’t go. My parents and E came back and my mother could hardly stand on her own. She was hysterical. “Grey! He’s so grey!!” She wasn’t calming down. Panicked, I ran to the nurses station. “Can someone get a doctor? My mother…my mother…she’s…” I didn’t even know what to say, but they knew. Their faces were red and swollen with crying, too. I think A had been there longer than any patient they had ever had. They’d all become so attached. A few minutes later, one of A’s doctors appeared with the adavan (attavan? I wish I knew how to spell this), the same drug that kept my brother calm. He sat with my mother as she swallowed the pill, holding her hands and speaking calming words.

I don’t remember how long we stayed there. Eventually, the decision was made to go home. Dad and mom in one car, E and I in the other. I would take E to his dorm room so he could collect some things, and then get back home. Some friends of my parents had showed up, the H’s They would stay with my parents, and collected names of people to call and notify, so my mother didn’t have to do it.

E took forever in his dorm, while I waited in the car outside. Almost an hour. I was so irritated. What was taking so long? I want to get home. But we had just lost our brother, he lost his twin. He could take all the time he needed. I sat and waited and watched the rain on the windsheild.

When we got home, the H’s had picked up a bucket of KFC. It was the middle of the afternoon, and none of us had eaten since the previous day. In spite of everything that had happened, I was famished. Fried chicken: comfort food in a time of much discomfort.

Over the next few days, friends and relatives poured in, bringing food and tears. Seriously, we had so much food. Lasanges and lunch meats and casseroles. I guess people figure it’s the best they can do. Our pastor came over for lunch, and we shared with him stories of A, so he could prepare the memorial service. Some of them were funny and usable: remember the time A and dad went hunting and A shot a pheasant, but it didn’t die, and they whacked it against a tree and it STILL didn’t die and dad had to wring its neck, and they told us the whole story BEFORE we ate it for dinner, and nobody ate it? Some were funny, but not so usable: Remember the time A took one of my old skirts from the attic and put it on at school as some kind of protest against the dress code? and the principal called my mother, who had no clue because A left the house in shorts, and when he told her, she asked “well…is it against the RULES for my son to wear a skirt?” and the principal just sort of stammered and said well, not really, but he is creating a disturbance and he’s wearing shorts underneath so we just made him take the skirt off, and my mom said what is it you want me to do? and he said that she should just be aware. All his friends said they’d wear a skirt the next day, but of course they never did.

A’s memorial service was full of laughter, as the stories poured forth. He was such a funny, quirky guy.

While we were still in the hospital, right after A died, our social worker warned us that some people will say the stupidest things to us. They will mean well, but it will be stupid. And we were under no obligation to be polite to these people. We were in deepest grieving, and we could tell off the stupid people without fear of retribution. Those words stuck with me. After the memorial service, as we sipped on punch and nibbled on sandwiches in the reception hall, this dumbass guy who’d been hitting on me all spring at church came up to me and asked “So, are you glad?”

“what?”

“are you glad? that it’s over for him. that he’s at rest.”

and I looked at him, and those words came back to me, and I thought NOT ONLY has this guy been inappropriately hitting on me while I’ve been going through all this for months, he has the NERVE to ask me if I’m happy about my brother’s death?

So in my most irrate and disdainful voice, I said:
“NO! I’m not GLAD!!! I want my brother BACK!”

And I walked away.

I laughed and cried, but mostly cried. My brother, who’s life was looking so good, who had turned things around for himself, who had SO MUCH to look forward to, died one week before his 19th birthday.

18 year olds are not supposed to die in bed, covered with tubes and needles. They are supposed to be reckless and stupid. They are supposed to be running around with their friends, drinking and making poor decisions. They are not supposed to die slowly and painfully, while their family watches in anguish, helpless.

Tomorrow will be the 6th year anniversary of my brother’s death. Not a day goes by that I don’t think about him. I think about how he’d react to some situation, or what he would be doing now. How nice it would have been if he’d been at SCAD and I could just drive a few hours and visit him on the weekends, or he could have visited me. Sometimes I catch a glimpse of someone walking, and he looks just like A, the short hair, big nose, ambling gait. Adam Sandler, actually, kind of looks like A.

For the next few weeks, I think we all felt hollow. For so long, all of our lives had revolved around the hospital, around A. And now, we didn’t have that anymore. I would think “I dont’ have to go back to that place anymore! I don’t have to smell that smell!” and then I would remember why and I would start to cry all over again.

Slowly but surely, we picked up our lives. Not like before, things would NEVER be like they were before. But we had to find a new way to move on. Fresh, but with a heavy weight on our hearts.

Next: long term aftermath

Losing

ESC — Fri, 22 Apr 2005 12:02:00 +0000

fighting the good fight

The yeast infection was only the beginning. And we knew where it all was coming from. Seemed like 20 different doctors were in and out of that room all day. Then they were on to their next patient in the ward. They would wash their hands each time, but they NEVER WASHED THEIR STETHESCOPE!!! Not once.

A multitude of nasty bugs set up house on A’s body. Including the dreaded VRE. We were assured that as long as all those bugs stayed OUTSIDE of his body, he would be fine. We started wearing masks when we visited him. To treat the nasties, A recieved a variety of experimental not-quite-approved-by-FDA-yet antibiotics which we were told we quite toxic. He got this stuff ALONG WITH the chemo. I think they upped the strength of the chemo drugs, too. I remember one day a nurse came to administer a dose. It was apparently very nasty stuff, those who had given it to him before wore protective clothing and a few layers of gloves. This nurse just had gloves on. She went to hook it up to the IV, when something slipped and a few drops of the stuff got on her sleeve. She flipped out and started screaming at me “YOU DISTRACTED ME!!! THIS STUFF CAN EAT THROUGH YOUR SKIN!!! LOOK WHAT YOU DID!!!”

Bitch. Learn how to protect yourself, and stop watching the fucking TV while you’re doing it.

I do have to say, for Jamie’s sake, that the vast majority of the nurses in the neurointensive care ward were the most wonderful people in the world. They got pretty attached to us and to A, even though they never heard him talk. They heard enough stories from us that they felt they knew him. The one guy, Gregg, had 4 kids that were home schooled, lived on a real working farm that they ran themselves, and STILL occasionally came in on his days off to check up on A.

Just wonderful people.

During this time, I was a zombie…set on automatic. I became the mouthpiece for the family. I would go to church on sunday, and have to face a multitude of questions from people. “how is he? how are your parents? how is E doing?” I would put on my brave face and try to answer without breaking down. “oh, he thinks he might have felt the doctor touching his arm yesterday” and they would smile and say “wonderful!” and I would die a little inside. My hope was wearing out.

A few times a week my mom would come into my bedroom in the morning and just break down crying on my shoulder. “I’m afraid he’s going to die! what will we do? He’s going to die!” How could I comfort her? I was fast losing hope myself, and I didn’t have anyone’s shoulder to cry on. My friends were still in school. I was all alone. And it was unfair. Unfair that I couldn’t lean on anyone, unfair that my mom leaned on me while I felt just as helpless. The whole situation was unfair.

I cried alot. By myself.

In April my parents requested a new neurologist. The previous one was an arrogent bastard and we never really liked him. I found out much later that in January, when A was diagnosed with the GBS, my parents met with him to discuss treatment options. He told them “I don’t think he’s going to make it. I think the combination of the GBS and leukemia will kill him”

If I had been in the room I think I would have punched his face in. Bastard. You just don’t SAY that to people…at least not in that matter-of-fact kind of way.

One of the weirdest things that happened during all this happened during my mom’s watch at the hospital. There were three ministers at our church, and one would usually come by a few times a week. One day, one of the associate pastors showed up. He told my mother that several people in the congregation expressed concern that my brother’s illness was being caused by…(I am not making this up)…evil spirits. And would my mother mind if he annointed my brother with some oil and said prayers to get rid of any evil spirits.

My mom, not sure whether to laugh or cry, told him to go ahead, every little bit helps. So A was annointed, and it did not one damn bit of good, of course. But how funny! Evil spirits? We’re PRESBYTERIAN! The white breadiest of all the protestant faiths!

We still laugh about it to this day…”evil spirits.” MORONS!

Here’s where my order of events start to get fuzzy.

I think was a monday or tuesday, and I was taking my mom’s shift during the day. A had been pretty quiet, not itchy, not needing much medicine, and he didn’t really respond when I offered to read to him. I didn’t think much about it. I was reading a book, and just sat quietly with him. A nurse came in to clean the bandages around his trach tube and to shift his position on the bed to prevent sores. I helped her out. She noticed something I hadn’t – A looked puffier than normal. The skin around the trach was swollen, not red, but it puffed up over the bandages. Weird. Then I noticed the monitor. His blood pressure was REALLY low. Very weird. And his cath bag wasn’t very full. Shit.

She came back a little while later and gave him a shot that was supposed to raise his blood pressure. Doctors came in and out. They spoke with nurses in hushed voices. A’s kidneys weren’t working properly. “why don’t you hook him up to a dialysis?” They agreed, and A was hooked up to yet another machine. Wednesday, mom and dad had a meeting with some of the doctors. I sat with A, along with his friend J.

I have to say that E and A’s friends were always visiting, bringing CD’s, sitting with A while we’d grab lunch or dinner, chatting with him. C and her mother were frequent visitors, too. I loved C, she was so sweet. I think we all had assumed that A and C would eventually get married. They were just so much in love. Silly and premature thinking, I know, but I was looking forward to having C as a sister in law.

Anyway, my parents were at the meeting, and J and I sat with A. I knew that something was up. On the TV, the news was reporting a school shooting somewhere in colorado. It didn’t really register with me. At some point, the social worker who had been assigned to us back in January, came to get me. My parents wanted me to join them in the meeting.

I walked slowly down the hall, slightly light headed. The social worker had such a sad look on her face. I opened the door, and my parents and some doctors were sitting at a long table. My parents were crying. Shit. shit shit shit shit shit.

“We’re going to let him go” my mom cried out, too loudly, and broke down sobbing.

I can still hear her saying that, the devastation in her voice echos in my brain. It haunted me for a long time, that phrase. “we’re going to let him go”

“NO!!! He’s still OK! The dialysis is helping! Right! We can’t….we can’t just… give up!”

And the doctors told me to sit down, and they explained to me what my parents had known for a couple of weeks now, but never told me. Despite their best efforts, the infections on my brother’s skin had spread all throughout his body. They were attacking his organs. Everything in him was failing, not just his kidneys.

There was no hope. They were going to shut off the ventilator. Friday morning.

Everything is a little blurry after that. I remember calling my church, asking them to send the head pastor over…NOT the “evil spirits” guy. I remember grabbing my purse from A’s room, and trying to act normal in front of J, so he wouldn’t know. But I think he knew, I guess E told him.

My parents spent the night in the waiting room. But I had to get out of the hospital. I had to be by myself, I had to call my friends, I had to get SOME comfort. My friends did the best they can. My best friend, who was at Penn State, cried with me. We had been friends since 6th grade, and she knew my brother. My college friends never really knew him, but did the best they could. I only slept that night, in the house by myself, because my body and brain were rock bottom exhausted.

The next morning, I drove back to the hospital to start the death watch. The pastor was there, and numbly, my parents began to make plans, a funeral, a memorial service. Not in the room, my dad decided. A might be able to hear us. But A had, as best we can tell, slipped into a coma, probably that monday as I sat with him, and never noticed.

A huge group of E and A’s friends skipped school that day, and filled the ward. It was an odd variety of pierced, spiked, dyed, and all black clothing. Sitting in the halls, comforting each other.

My whole family spent the night in the waiting room, on uncomfortable couches, dreading the morning that came too soon.

Early, we sat in A’s room and watched the technicians as they gradually turned down the respirator. A little more…a little more. The heart rate and blood pressure screen was shut off. But I could still hear it in the nurse’s area. A was fighting. While his blood pressure dropped to barely anything, his heart beat was strong. The respirator was barely on. And we knew that it was time. I reached over and touched my brother’s leg, to comfort him and myself, but jerked it back quickly. His leg felt dead already, cold and hard. As we stood around him crying, on Friday, April 23, at 9:06am, my brother lost the fight.

I will post more when I stop crying.

Fighting the good fight

ESC — Thu, 21 Apr 2005 14:49:00 +0000

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.

The fight begins

ESC — Wed, 20 Apr 2005 11:57:00 +0000

A on left, E on right