Ambivalent: Daily Update 12/30

Everything kind of blurs together at this point, like a mosaic of raindrops that are falling onto the windshield of a car and merging themselves into clusters of odd, haphazard shapes while you’re trying to navigate through a city of flashing, neon lights.  It’s disorienting; you forget what you are for a moment and what everything around you is — what it means, and what it’s worth.


Bobby has cancer. 

Bobby had to have his brain tumor removed.

Bobby had to be kept at the hospital for two months – he was in recovery; he hadn’t come home, he couldn’t come home — not even once.


Our playroom was sadly quiet, our video game system was off gathering dust in the corner, and Bobby’s loud, contagious laugh, which usually rang merrily throughout the house all day long, was painfully absent, hiding dormant under the carpet, trapped behind closed doors and stuck inside the walls.


When would I see my brother again? Did he look the same?

Was he the same?


As I mentioned before, they kept Bobby at the hospital for two whole months after the surgery.  Mom, dad and Gram took turns staying at the hospital with Bobby so that he would never have to be alone.  They were there to ask the questions they needed to, give the answers they had to, and make sure that the nurses were doing exactly what they were supposed to.  After a few weeks, I was allowed to drive up to the hospital with whoever was going to trade shifts that day, and I was finally able to see my brother for the first time since his surgery.


Grammy was the first person to take me to the hospital with her, and on the days that Grammy had to leave the house and go to the hospital, she took a bus.  Grammy couldn’t drive, and I don’t mean that she just didn’t drive well – she had never gotten her license.  She legally could not drive.  The bus rides took longer than car rides would have, but they were more interesting than just riding in the car.  There were people to look at in the seats next to and across from you, conversations to listen in on, and city sights and smells that made the trip novel.  So on one particularly special, fall morning, I skipped school and Grammy and I took the bus to the hospital together.


We stepped off of the bus and walked up to the hospital entrance.  There were lots of flights of stairs to climb and we rode what felt like virtually every elevator in the hospital to get up to Bobby’s floor. Once we had reached his floor, we began a short trek down a shiny, tiled hallway, passing nurse’s stations, vending machines and buckets with mops sticking out of them and leaning against the walls. We finally located where Bobby was staying at, and once we had walked inside of the sterile, white-walled room and I could see Bobby’s form lying on the tall, white bed in the middle of it, a sick feeling hit my gut.  I sensed a change; things were different.  The room smelled like a mixture of ammonia and linen.  My mom was sitting over in the corner of the room, and she smiled weakly at us once we had entered it. 


I walked over towards the bed that Bobby was laying on, slowly, and carefully.  The footsteps I took were soft and inaudible; I was mindful and in awe of the beeping monitors, liquid IV bags and needles and gloves around me everywhere.


“Hi Bob,” I whispered when I reached his bed.  I waited for him to turn his face to see me, but he didn’t.  I frowned a little.  “Hey bob?” I said a little louder, touching the part of the sheet that was covering where his leg was.  No movement.  No response.  Nothing.  I could tell that his eyes were open, but he wouldn’t look at me; he wasn’t talking either, and it almost seemed like he couldn’t hear me. 

“Mom,” I started to cry, “why won’t Bob say anything?”

I looked behind me and mom was leaning up against the wall now, crying.  “Oh, he’s not upset at you or anything like that, sweetie… don’t feel bad! He just can’t talk very well right now.”  She walked over to hug me and gazed down at Bob. 

“He’ll be better soon.  Right now, Bob is feeling very quiet and he is very tired.  But I know he’s glad to see you!”  She stroked my hair and smiled at me, which struck me as sort of unusual; she was never very affectionate or touchy.  I looked back over at Bob and gasped; where his head touched the pillow, I could just barely see the outline of bloody stitches… or where they STAPLES?

“How about you and Grammy go play in the children’s room for a little bit?” Mom suggested quickly, looking over at Gram.

“You got it doll babe.”  Grammy took off her glasses and wiped them with a kleenex before putting them back on. I looked over in the corner and saw a tissue box sitting on top of a small table that sat right beside a green guest chair; I guessed that it was the chair that mom had slept in the night before.

“Once you two get back,” mom continued to Gram, “I’ll take Rose back home, give myself a shower and take a short nap.  I’ll be back this evening to check up on him.”  Grammy nodded quietly.

“Alright Rosebud, let’s go play for a bit.” Grammy smiled at me brightly, her eyes wide and glistening and twinkling with mischief as usual.  “I want to see that kitchen set again.”


It took a lot of adjustment for everyone to get used to the new schedule. Grampy was still stuck working in Florida, but Grammy had become a permanent resident in our South Carolina garden home.  She slept out in the livingroom with me when mom was staying with Bob overnight, and on the few occasions when dad was able to get off work and stay with Bob, mom, Gram and I all shared the big bed in dad’s room.  My days became more routine: mom signed a permission slip for me to be able to ride the school bus and I began doing so right away, walking to bus stop early in the morning and running home from it in the middle of the afternoon.  Someone was always home by the time I got there and a surprise plate was usual waiting on the table: it usually contained a sandwich with the crust cut off, a handful of Lay’s potato chips, a whole dill pickle, a wedge of cheese, or maybe some saltine crackers with peanut butter spread onto them.  I would play in my room during the afternoon, or meet up with Jacob and Rachel outside.  Grammy took us to the pool sometimes; she didn’t seem to mind chaperoning like the other adults did.  While swimming, she would sneak attack us with squirt guns, and we loved it when thought up games for us to play.  One of them was an “underwater search” sort of deal: Grammy would throw heavy, rubber objects (designed for pool play) into the pool that would sink to the bottom, and then she’d hold competitions to see who could retrieve the most of them the fastest.  Every kid in the neighborhood liked Grammy, and I think they liked me even more because I belonged to her.


The fall passed quickly and winter began to set in.  Winter wasn’t very severe in the part of South Carolina where we lived in, but we still maintained a relatively good chance of seeing snow every year.  Bobby’s two months finally ended and he was brought home.  Things may have improved in actuality, but to me, they seemed just as bad as the first day I had seen him in the hospital, and every visit I had with him afterwards.


“He still won’t talk to me,” I complained to mom in the kitchen.  I had my arms folded across my chest and I was mad.  “Why won’t he?”
”Rose, please, not right now” my mom pleaded, feeling slightly exasperated after making the transition between caring for Bobby in the hospital environment with professional support and taking him home to care for him herself.  It was a lot of responsibility to take on, and even with Grammy’s watchful care and assistance, my mother had spread herself very thin.


“I just want to play with him like—“


“Rose, listen, Bobby is still very sick.  As you can obviously see, he doesn’t feel like playing.  He can’t talk, he can’t walk, and he can hardly even stand it when you have the television on.  Just do me a favor and lay low; play outside, play in your room… do something to amuse yourself!  Leave your brother alone… let him rest.”  She left the room with a sigh and I stayed standing there, angry.  No one paid attention to me anymore.  It was all about Bobby.


Even Bobby didn’t care about his sister anymore.


I found out, as a teenager, just how serious things had been for Bobby during his two month stay at the hospital and especially afterwards.  After the surgery, Bobby’s brain area swelled so intensely that it impaired a lot of his ability to function.  In addition to extreme discomfort and even worse headaches than before the surgery, Bobby reverted back to his “baby” state because of the intensity and sensitivity of the operation.  He lost the ability to talk and even the ability to walk; it impaired his motor functions, comprehension skills and more.  The swelling took more like months than weeks to settle down, and these symptoms raged in his body until then. 


After a few months of rehabilitation, including visits with a speech therapist and a few failed attempts at having him work with physical therapists (he was more comfortable with Grammy coaching him at home), he was able to communicate again and walk slowly, with an arm to lean on and a reassuring wheelchair nearby for “just in case.” 

He was a little thinner, and a little moodier, but he was mostly the same.  His hair was even growing back a little; a soft, thin layer of golden brown that complemented his green eyes and his sweet smile.


Things seemed to be getting better and looking up for our family.  Grammy began making plans to go home and mom even looked into having Bobby start his classes back up the next fall.  It was January by now; still cold, and just a little too late for him to start the spring semester… not that he was ready, anyways.


And then, just to burst everyone’s bubble, things got bad again.


Headaches returned, his balance stopped improving and regressed like a landslide.  He lost his appetite and his mood swings were more frequent, more violent.  He was falling fast and hard.  Mom and dad took him back to the doctor, afraid to ask but forced to know.  Had the cancer returned?


It had… and there was more of it than before.

Tiny little tumors were sprouting all along his brain.  The cancer had even begun spreading to his spinal cord.


“Chemotherapy, radiation.”  The doctor said it matter-of-factly.  You could see sadness and resignation in his eyes at once. “There’s no way around it.  I know you didn’t want to get into right after the surgery, and it was a chance.  You both knew it was a big chance you were taking.”

Mom was frozen at first.  Sitting in the same blue chair.  Staring at the same old, cold tile floor.


“Which.. I mean, which would be best?” My dad asked.  His face looked tired, his eyes were read.  He was still in his all-white bakery uniform, having left work early when mom called, crying, at her wits end.  He hadn’t eaten since four in the morning and it was now four thirty in the late afternoon.


“Honestly?” The doctor waited for a response.  My dad shook his head; yes, honestly.

“Both.”  He leaned back against the counter, his clipboard dangling at his side. “I wouldn’t chance it this time.”


Chemotherapy.  Radiation.  It was a lethal shot to the immune system, he said.  Bobby will experience the hair; some will fall out naturally due to the chemo, his parents will probably want to shave the rest off so it looks “normal.”  There will be irreparable brain damage, killed cells, cells that can’t recreate themselves and ever exist again.  More tubes and IVs and mood swings, appetite loss, weight loss and a bone marrow transplant would be absolutely necessary before the treatments began.  They had to harvest the spinal fluid before it went to pot. 


Six months of chemo, seven weeks of radiation.  Those were the stats. The information buzzed around my parents ears and whipped itself in their faces.  It was too much to take in at once.


“And because of his weakened immune system,” the doctor continued, “it is very, very important that you keep him warm, keep him clean, feed him healthfully, and keep him away from anyone who is sick.  It is a serious matter; it’s the biggest risk in this.  If he catches anything… he might not be able to handle it.”  The doctor looked each of my parents in the eye as he said it, stressing, emphasizing the danger so that they would be fully aware. 


I wasn’t in the doctor’s office with them this time.  I was at home with Grammy, in bed, with the flu.  I had thrown up four times so far and she was trying to get me to keep down Gatorade.  We were watching “Adventures in Babysitting” together… all three of us.  Bob was holding the cat in his lap.  Grammy had a Bible in hers.


Dad looked straight at mom and just outright said it.

“We’re going to have to let her stay with them for awhile.” 


Aun Aqui

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Personal stories, lengthy rants, and lighthearted explosions of optimism, all neatly bundled into one blog.

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