Saturday, October 4, 2008

Candy Land And The Chemo Screamo Demons

Uncle Dean arrived from Milwaukee around 11 a.m., and Pablo's fun Friday kicked into gear. Like, seriously high gear. Intense energy and exuberation are part of the chemo roller coaster. Dean, Jo Ann and I know this from our experience with Scott, who, if he was on the post-chemo upswing, would call us at all hours of the night, and want to talk talk talk. In Pablo's case, while the drip is on, and immediately after, he might be sleepy, irritable, uncomfortable, or any number of other unpleasant things. Thursday night, Pablo woke up in a ball of confusion and angst. Jo Ann described a fire in his eyes that Dean and I saw in Scott many times. It feels like he is looking through you with Godzilla eyes. It is the epitome of feeling like your child might be possessed by some foreign spirit. In Pablo's case, we know the spirit is a necessary evil. This six month course of chemo is the scorched earth / no cancer cell left behind plan. Godzilla eyes are just part of the game.

With children like Pablo, they do the chemo at night, while the patient is asleep. It's a good, efficient idea that allows the child to have physical and emotional freedom during the period of their usual waking hours. The fewer things we change in Pablo's schedule, the better. The fewer things Pablo remembers the better. It's the least we and the docs can do for him to aim toward a normal life.

This nocturnal transmission has a single downside: it sets a backdrop for the mid-night chemo screamos that I described above. There's nothing one can do about this. If the medicine causes Pablo to feel like he's coming apart from the inside, he's going to, a] wake up; b] freak the F out using his voice and his body to exorcise the chemo demon; c] go back to sleep and probably not remember his 'get behind me Satan' moment in the morning. It all sounds so logical and easy when I see it in writing. Somehow, seeing Pablo scream and oscillate wildly during daylight hours is easier to accept than the same happening in the darkest hours of the night. But, again, if this all went down while he was awake, he'd remember it. Since starting treatment, Pablo generally has no memory of stuff that's happened in the night. I hope this can be accurately attributed to sleepiness, and not the start of a traumatic disorder. I have PTSD from the country club lifestyle I grew up in.

Dean and I don't have many memories of childhood, period. It's the gift / curse of Post-Traumatic Stress Disorder. On the good hand, by design, PTSD shields you from some of the gnarliest memories. On the bad hand, I can't remember things like, well, if I ever had a birthday party. Most of my positive memories are from the few photos we have. It's weird. But it makes for a light load when the movers come.

Jo Ann and I are conscious of the PTSD stuff. We will have to address it with ourselves and Grady as well. But we aren't there yet. We have to get to the post- part before we can confront that.

No matter how level-headed I sound, I was hoping to spare our sons the experience of it, yknow? In accepting that Pablo won't be starting kindergarten as planned, I have begun to accept that there are many off-script things that are going to go down in his life. Grady is old enough to comprehend what's going on, and has plenty of outlets for his confusion or anger about his little brother's scene. Like any parent, I had hoped to give Pablo the kind of life I didn't have. I wanted him to feel safe and protected. I'm not talking about the the basic plan—I mean the kind of nurturing that would allow him to have balanced self esteem and not walk around battling negative self talk for the rest of his life. For a guy like me, that would be my greatest achievement in life.

I keep thinking that we didn't even get Pablo vaccinated cos we didn't want to had hoped to shield him from any sort of potential harm. 11 days of radiation and nine months of chemo kind of negates all that organic human body stuff. But I love that Jo Ann was so passionate about keeping the American cheese pediatric practices away from Pablo. I stand by her on it. And I make the juxtaposition to illustrate one of the great ironies of Pablo's cancer treatment.

¶ During the day, Pablo is a ringleader whose platform of operation is an adjustable hospital bed. Like the old school characters in my dad's old corner tavern in Milwaukee, Pablo is all about playin' some games to pass the time. He doesn't view it as passing the time, he just sees Room 438, Bed A as this week's location for kicking everybody's a**es in Candy Land, Uno and Sorry!. Like his big bro Grady, the kid is a fearless, ruthless competitor. And now that he has some verbal skillz, he lays a sassy Howard Cossell play-by-play over the board game beatings. It's really something to watch him operate.

Friday evening, after our funny and yummy Malo taco 'n chip dinner, I walked Tony and Joanna down to the lobby. When we left Pablo's room, he was awake, putting on his pajamas, jumping all over the place. When I came back a few minutes later Pablo was laying in bed, sweetly and soundly sleeping. He told Jo Ann and Dean that he was tired, and—remarkable for a five-year-old—laid down on his side, closed his eyes, and fell out. The lights were still on. His roommate's TV was blasting WWF wrestling. And there was Pablo asleep, with his Mommy, Papa and uncle Dean looking on. His eyes were about one-third open, and Jo Ann asked me to close them. I did.

As we were sitting in the room quietly chatting, our nurse, Lizelle, came in with a fat, juicy I.V. drip bag—the first chemo drug for the night. You can always identify the chemo stuff from the florescent WARNING stickers on the bag and tube—the kind of label you see on the side of a truck carrying a tank of liquid nitrogen. The nurse has to wear a special gown, a mask and gloves when administering the stuff. This medicine can burn the skin on contact. In fact, when Pablo wet the bed Wednesday and Thursday night, Jo Ann had to immediately give him a towel bath. Even Pablo's urine is toxic in the hours after a treatment.

An hour into the treatment, Dean and I went home. Jo Ann was ready to hit the hay, and so were we. When we go home, we watched Real Time with Bill Maher, which must be one of the greatest shows ever to be transmitted into the homes of our fine nation. Alec Baldwin was one of the panel guests. I could watch him eat breakfast and find it fascinating. Anyway, for 30 minutes Dean and I laughed and laughed and laughed. We needed that.

It is not lost on me that in the time we have been a cancer family, the world has changed, probably forever. I am not a 'sky is falling' type of person who recites the day's newspaper headlines and starts things on fire. But what I am saying is that the level of national and international fear and tension and uncertainty brought on by the financial gymnastics of late comes close—close—to that special feeling of 'FFFFF######*******KKKKK!!!!' that Jo Ann and I have been feeling since May 17. Know what I mean?

Does misery love company? In my case, no. Absolutely not. Well, maybe a little. I was happy when everyone else was happy, or at least comfortably numb. It was nice to, say, walk out of the hospital and get a shot of the real world—a world that included smiles and laughter (does anyone remember laughter?). Now, everyone's walking around with a frown. Over the past two weeks, it feels a little crowded in the pity party aisle at the grocery store. Being in the cancer ward at CHLA is like being on retreat.

One thing's for sure about the world today—the comedy's better. And laughter is a medicine that works every time.

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