Monday, September 15, 2003

Chemo Day 1. I know I am going to regret saying this. But Day 1 was anti-climatic. I'm sitting in bed at the house, a little queasy, knowing it is GONNA get worse. Today was not so bad.

Sara got me into the office at 9am for my 9:15 appointment. Dr. Scates said my bloodwork looks great, everything is normal, nothing is climbing rapidly, I should react well to the drugs. We chatted about cars, he has a Ferrari 350. Cute little sports car. :-> I think the cars & bikes in common is helping us have a middleground to relate to.

He takes be back into the 'infusion room'. open room with windows, and a row of blue chairs around the outside edge. You sit in the chair, with this big post next to you, where the IV drip hangs from. Some people have a pump to push the chemo in, me, I just rate a drip. So I sit, Dr. Scates gives some instructions to Marta, the nurse, all I can overhear is "first time, very nervous, help him" Which is all true. I am shivering and shaking, and worried about what the heck is gonna go down.

Dr. Scates brings me some 'sample packs' of drugs. Apparently this is a cool way for doctors to give patients free dope. I got 5 100mg tablets of Anzemet. And can take one of these nightly before bed, to reduce nausea. I also got a box of 5 8mg Zofran. These can be used 3 times a day, orally discolved under the tongue for nausea. No discussion of Procrit for energy yet.

Steve leaves and Marta comes to chat. I inform her I am a big stinking wussie baby, and needles scare the heck out of me. I fo not know if it is the needle part, the through the skin part, I have no idea why, but I really do not like needles. She understands, used to be a pediatric nurse, and knows how to handle babies.

She starts a saline IV drip into my left hand, the arm feels cold, from the inside. I am scrunched up and fidgeting, and deep breathing, and turning pale. I try to reassure her it is nothing she did, but all a mental issue of my own self infliction.

No problem. Once again, I am in drug central. Drop in some Ativan, this makes my arm feel warm. Not fire, but more like someone just spiked my arm with some hot salsa. Kind of spicey warm and chunky. Then, a few moments later, it feels fine. I kind of like Ativan. Sure, it's no Morphine, but it makes me relax and stop squirming like a freak.

Marta predicts 4 hours to get all the drugs into me.

Once the saline is in, we switch bags and start on the Etoposide, also known as VP-16. This one made me 'feel' all the previous breaks in my bones. they kind of ached a little more than normal.

Etoposide: It prevents cancer cells from growing by interfering with the DNA. Early side effects include: Metallic taste in mouth (check), Mild Nausea (check), Facial flushing and reddening (not yet) allergic reactions can occur, but they are rare (not yet) and Inflamation of the vein used for the IV (check)

Long term effects include: Temporary decrease in white blood cell counts occurring within 1 to 2 weeks of treatment. AND, Temporary thinning or loss of hair beginning 2 - 3 weeks after administration of drug.

Next we switched to Cisplatin. prevents cancer cells from growing by interfering with the DNA. Early side effects include: Nausea and vomiting may occur during administration and for 24 hours after, lasting several days. this can be controlled with medication. Diarreah may occur, but usually subsides within a day (this is, of course, another good reason to post verses to the "Diarreah Song" which I will do at the end of today's entry.) Finally, Loss of apetite may occur 12 - 48 hours after injections, and may last 1 week.

Late side effects: Ringing or 'stuffed' sensation in ears (check) and lowered blood cell count.

At this point, I met Joan from Los Gatos. She is fighting breast cancer, and was giving me some kind patient tips. Her husband rides a BMW, and she has a Vespa. She's also writing a book on how to manage your treatment, What to look for, how to research it, etc. She was very nice, will see if we meet her again.

Finally, I finish the cisplatin, and get a 250ml bag of saline. Just to make sure I am hydrating enough. I finis around 2:30 pm, and oddly, feel okay. Marta even told me the drucs may give me a little more energy, and try walking tonight. So I will.

Tomorrow, I will try to drive myself. There was nothing after the treatment that would have prevented that.

I KNOW further into the treatment, I will need to arrange rides. But tomorrow, I will drive. (I say that now, from the comfort of my bed.

SO! What did I notice? What is different? What is happening? What do I feel?

Sara picked me up, we drove home, and I had some leftover steak, eggs, beans, and about 5 big glasses of water. My ears are already sensitive, every little sound annoys me. Sara is ironing, and I can hear the iron passing over the grain of the clothes. The radio in the front room is low, but it rattles and tingles my ears. I will wear earplugs a lot through this.

I have to pee a lot from all the water, that is normal. However, the urine smells like puppy pee. There is no other way to really describe it. It smells like a month olf puppy dog's pee. Either you are familiar with it or not.

My stomach IS queasy, but I do not think I am about to barf.

There are random 'pricks' of firey pain in my veins. sort of floating around my arms, legs and chest. Every so often there is just a 'prick, hello, we are here, reminding you it hurts"

My fatigue is not as bad, but the muscles in my crotch where they surgeried out my testicle feel sore. Tired kind of a sore. Like it will hurt to lift that leg.

the tips of the fingers on my left hand (where the IV was) are tingley. Probably fromme clenching them. And my forearm where the goo went in feels bruised. It is not bruised to look at, but it FEELS like someone gave me a good whack with a stick.

My digestive system seems to say "poopy time" but it isn't. so that is odd.

Okay, so first day, drugs in and circulating. Boy resting.

Before I go, the Diarreah Song.

When you're running into first
And your feeling something burst
diarrhea, diarrhea!

When you're truckin into second
And your feelin something beckon
diarrhea, diarrhea!

When you're sliding into third
And you dump a greasy turd
diarrhea, diarrhea

When you're sliding into home
And your shorts are full of foam
diarrhea, diarrhea

there are some variations out there, but baseball is the way I remember it all goes back to the "batboy was evil" story, which I will repost for our audience...

More Diarreah links

The Batboy was Evil

Growing up in a small, East Texas town was tough. I was a short, underweight, intellectual type in a town of tall, blonde, corn-fed boys. I was a shadow, a fly on the wall, the last kid picked for kick ball. Adult: cool to be different. Child: worst thing on earth. When you are eleven, you want to be exactly like everyone else. It wasn't just me, my entire family was different, we were the Addams family in a subdivision full of Bradys. Occasionally, Mother tried things to make it better; swimming lessons, Cub Scouts, then Little League.

"Little League will help," the man from the Optimist club told mother, He looked down at me like I was some circus freak, a kid who rode the “short bus” to school. "Builds character, teaches teamwork," he muttered. Old bastard.

I begged mother not to make me do this - I knew it would be horrible. I wasn’t athletically inclined and I’d never be athletically inclined. But it was the early 70's; I was too small, Mother was too strong, I got an orange baseball cap and blue glove.

In sharp contrast to my fear and dread, my younger brother viewed this as a fabulous opportunity. Three years younger, already taller, Louis became team batboy. As a ballplayer, I was expected to perform. I had to hit the ball, catch the ball, run around like I knew what I was doing. The batboy, however, had the lush life. His job was running out to the plate between hitters, bringing back used bats, and retrieving foul balls. I don’t know if the problem began with button-fly pants, or foul balls, but there was a problem.

When a batboy retrieved errant balls, he got a token from the umpire. Ah, the magical tokens. Louis would hold them up to the sky and dance around. Good for spiffy treats at the concession stand, rocket fuel for a hyperactive seven year old. Since the early 70s, doctors have revised their views on sugar and hyperactivity. We knew that if Louis drank a few root beers and ate cotton candy, he was good for 3 more innings.

Half a season passed and I managed to not get killed. Then it happened.... no, I did not hit a magnificent home run leading my team to victory, insuring well-adjustedness for the rest of my life. Rather an incident that shaped me for years to come. I don’t remember much about this particular game, except it was at night. Our pitcher was tossing blazing fastballs, our opponents were fouling out one after the other. Louis was happier than a pig in slop, he’d filled both pockets with "foul ball tokens" and was sucking down junk fast. Malted milk balls, sno-cones, butterfinger bars, bombpops, cotton candy, lik-m-ade, root beer, popcorn, sweetarts, goobers. He had tokens and he ate it all.

Our mother was sitting in the stands watching me sitting on the bench. Mom didn’t see all the junk Louis was eating, she was trying to see me build character while keeping Sherry, my baby sister, from crawling on the ground and putting cigarette butts and peanut shells in her nose. Louis, kept trading foul balls for hyper-fuel. He was so wound up he was just a blur. There were times we could barely make out the shape of his head. That boy was darn near close to achieving flight.

Finally, the game was over and it was time to drive home. The baseball park was on the “other” side of town, and although mom grew up in the South Bronx, it scared her go to "that" part of town. The big, green Olds Vista Cruiser Wagon was locked like bank vault. Nope, she did not like it. If she hadn’t forced me to undergo the twice-a-week humiliation, we could have stayed home in our safe, suburban house watching Star Trek re-runs. It was her own fault.

Before we left the park, Louis announced he "had to go." The ballpark bathrooms were outhouse type and Mom was afraid we’d get molested, fall in, or both. In any event, they were forbidden and we had to wait. It took considerable effort to harness Louis and get him into the car. He was running Mach III, Hair-On-Fire trying to burn off some sugar. We got him into the car with the promise of riding "shotgun" and away we went.

Mother said we could stop at Dairy Creme on the way home. Dairy Creme was a small Texas chain much like Dairy Queens of today. The sign was shaped like a giant ice cream cone, surrounded with malfunctioning neon. You could get burgers, soft-serve, and clean place to pee, statewide. One of these roadside wonders, an oasis of the blacktop, sat just outside the ball park. That was our destination. Soft Serve, whiz, then a 45 minute ride to safety of home. It sounded reasonable, simple enough. Louis and I would go to the bathroom while Mom would take Sherry, get four small dipped cones, meet us back at the car and head for sanctuary.

Mother changed Sherry, got cones and was back at the car in about four and two thirds seconds. I had no clue that I was about to experience one of those major character building events, the kind that sears itself on your brain forever.

I, being the big brother, had to take Louis to the bathroom. Louis, “Booger Beans” to my friends, was having difficulty un-buttoning his uniform pants. I offered to help.
"No, I'm a big boy, I don’t want your help damn-it!" he said as he frantically tugged at the fly. I knew when to shut up. I did my business, washed my hands and went out to meet mom. I don’t know why, but to this day I can close my eyes and see her standing next to the car. Sherry was buckled in the child seat, Mom had a gigantic Clairol red dye #5 bouffant and a bright green mini-dress with chunky white shoes. She was holding two cones and Sherry-Baby had two.

"Charles Barry Statman, where ex-actly is your brother?" Mom demanded. I knew I was in trouble, but none of us had an inkling of how much.

"He's is in the crapper, he can't get his pants un-buttoned." Two errors to start: I was never allowed to leave Louis alone, and it was a bathroom, not a crapper.

"Charles Barry, you go back and get him or you can't have your soft-serve!" After further scolding, I marched back into Dairy Creme to retrieve Louis. I heard him before I saw him, so did the counter lady, who had hair bigger than mom's and a cigarette with a half inch long ash dangling off it. She glared at me, knowing I was kin to what ever was screaming at the top of his lungs in the crapper.

Louis never did get those pants un-buttoned.

When I opened the men's room door, it was quite obvious he had, uh, er, done "number two" in his pants. I knew I was out of my league, I actually felt compassion for Booger Beans.

"Stay here, I'll go get mom," I said as I ran out to report the gory details.

"Mom! Mom! Louis shit himself in the crapper and I can't help him." She dropped a soft-serve (mine, I was sure) and smacked me. A horrible look crept over her face. It wasn’t because she had just hit me, either. It was the first time I remember seeing my mother become afraid. Not of child molesters and falling in the out house, but really afraid. Afraid of not being able to control the situation. And this was going to be one hell of a situation.

"Charles, go tell him to come out here." Well, I was back to Charles, if she was not using my full name, I might get out alive. I went back in to deliver her message.

They say the third time is the charm. Well, my third trip to the bathroom was not charming. He still couldn’t get his pants un-buttoned, but somehow managed to get his hands into his pants. I don't know, maybe he thought he could unbutton from the inside out. He was fueled by the intense sugar rush and now pumped to the gills full of adrenaline. When he pulled his hands out of his pants, he had apparently gotten them covered in, uh, er "number two" and got hysterical. Somehow he managed to get poop all over the front of his shirt, the sides of his pants, the bathroom counter, the silly cloth towel thing that was really just a big loop of cloth, it had a mean brown streak that would never come out.

There was poo on the walls, poo on the floor, poo on the ceiling. There was a MAJOR temper tantrum going on, and I didn’t want poo on me, so I split. I ran out of the bathroom, past the staring woman at the counter, out to the car. I informed, hoping it would buy me some immunity.

"Mom, he is covered in poop," I panted breathlessly. "I'm only eleven," I began to scream. "I don't know what to do!"

"GO BACK AND GET HIM," she said through grit teeth.

Trip number four to see a kid covered in number two. I tried to stroll casually back through the Dairy Creme, but counter lady knew something bad was going down. I ran past her and was in the bathroom with him again. The entire bathroom was covered. There was poo on the mirrors, door, and floor now. To make things worse, Louis had a bad habit of pulling at his hair when he had temper tantrums. He would grab big handfuls of hair, pull straight out, and scream. Only this time, his hands were covered with crap. His feces-covered hair was sticking straight up from his head, in two distinct “shit horns”. Today, he is a man of 30 who is losing his hair and I know why.

Whenever someone mentions Satan, I mentally picture Louis standing in the bathroom of the Eastman Road Dairy Creme with blood-shot eyes, little arms and legs flailing wildly, a bat boy uniform covered in poo, and shit-horns poking up from his head. He was furious. He was filthy. He was hyper. My job was to get him out of the bathroom, and I was not cut out for it.

He threw himself to the ground and yelled "I’m stuck! Go get Mommy!" With all the poo, he very well could have been stuck to the floor. I beat a hasty retreat to the parking lot, and stood up like a man.

"Mother I give up. I will not deal with this anymore!” I paused and then added, “I’m going to eat my soft serve before it melts."

She finished her soft-serve in one gulp, grabbed an old blanket we kept in the mighty Vista Cruiser, and went into the Dairy Creme to retrieve her child. I don’t know what she said to him in the men's room. All I know is, about a minute later, she came marching out with him following, wrapped in that tatty, old, yellow-striped blanket. All we saw were his feet, and these two gigantic horns sticking up from the top of his head. It looked as if the situation was under control, and we would be on our way.

"Louis, go sit in the way-back," Mom said, meaning the very back of the station wagon. A simple phrase, a polite, but direct request. To him, it was the final insult. The way-back was the least desirable position. No-one wanted the way-back. He began to protest:
"Shotgun! Shotgun! You said I could ride shotgun!" It might have been possible earlier, but was out of the question now. Mom was no fool, she didn’t want a crap-covered child next to her.

The sugary sweets flared up, he got an extra jolt of energy, broke from mother's grip, shed the blanket and began sprinting around the parking lot. Judging from the faces pressed against the glass, no-one in the Dairy Creme was eating their soft serve. Louis, the poop covered, shit-horned hellion was running circles in the parking lot yelling, screaming, and speaking in tongues.

I couldn’t help it, I started to laugh. I looked at the baby and she began to giggle. I laughed more. I was rolling on the ground laughing so hard I could not breathe. Sherry’s laughter turned to tears, she began to cry. She was covered in melted soft serve, watching one brother laughing like a hyena, the other brother running like a shit-covered super-hero, chased by Mommy, who couldn’t catch him.

I laughed so hard I peed in my pants.

"Get him!" was all I heard Mom say. I wasn’t an athletic child, but I brought him down in my best NFL-protest shoulder-clip from the rear. He squealed and dropped like a box of rocks. I was in charge now, no more tom-foolery. It was late, I’d been denied soft-serve, I wanted to go home, we were about to miss "Wild Kingdom” with Marlon Perkins.

Mom grabbed him. No more need for the blanket. Everyone in town knew what happened. She forced Louis into the way-back, put me in the back seat and fired up the cruiser. He kept trying to climb over the seat and no one wanted that to happen. Mom’s hair was leaning to the side, she was tired, fed up, hot, smelly, and at wits end.

"If he tries it again, just whack him with your baseball glove," she said. The ride home was the most fun forty-five minutes I ever had with that damn baseball glove. His horned head would pop up over the seat and WHACK, I'd let him have it.

We finally made it home. Dad, the engineer, was out watering the yard. White, v-neck T shirt, black sans-a-belt high-water slacks, watering the yard with a hose. Why men hold hoses on the yard when they have sprinklers is still a mystery, but I also do it now. Dad is incredibly intelligent, a tall, gentle man who’s own mother was cool enough to let him be a nerd and not have to do team sports. He knew little league was a bad idea, but he loved our Mom and didn’t argue with her about the small stuff.

Mom didn’t pull into the garage. She parked in the drive, rolled down the rear window, and Louis was out like a horse at the races, running in circles and screaming. Mom briefly explained the situation to father, and HE took control. Dad was the 1950s idea of a father; a good provider who took care of stuff when it went wrong.

"Charles, Louis, come here NOW!" he commanded.

We knew better than to disobey. Front and center, at attention. He ordered us to strip. In the BACKYARD! Naked! The neighbors could definitely see us, but we did as told.
"All clothes in one pile, stand still," Dad said then proceeded to shower us with the hose.

Mom found some Hartz dog shampoo in the garage.

"Next the baby," he said. Sherry got it too, although she got a towel shortly afterwards. I thought he was going to tell mom to strip, but she went inside. After all, the neighbors WERE watching.

The way-back of the station wagon was a terrible mess. I saw Dad cringe for a moment when he opened the door. His next action stunned me to the core. He hosed out the Vista Cruiser! Carpet, blanket, papers, moon roof, ball gloves, poo, everything got hosed down.

"The damn car is destroyed, it might as well be clean," Dad muttered. Even Louis was shocked. His tantrum came to an end, sugar crash: can't talk, coming down. Louis sat naked in the driveway and cried for a bit. We left the car open that night. The next day, it was dry, kind of nice actually, smelled of fresh cut grass. We kept it for four more years, and Dad still regrets trading it in.

Louis still eats junk food, says it gives him the energy he needs for extreme sports.

Sherry left home, made it as an attorney, and sees a therapist.

Mom still tries to control all of us.

Dad is still a calm, quiet man.

The Dairy Creme closed and someone made it a nightclub for girls who don't like boys.

Oh yeah, I never had to go to Little League again.

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