Saturday, April 9, 2011

A Day in the Life of a Bone Marrow Transplant Patient

My dad has a more predictable life than anyone I know. He walks at least four miles every day and has eaten the same lunch at work for the past fifteen years. He hasn’t eaten steak, cheesecake, real ice cream, a hamburger, donuts or any other high-cholesterol foods in over twenty years. He claims he’s allergic to any food he doesn’t like. He designates in advance a shirt and breakfast cereal for each day of the week, and doesn’t switch them around ever. He knows when he’s going to buy new shoes months ahead of time. He gets a haircut exactly four weeks after his previous one. He thinks there should be a traffic light at every four-way intersection. He calls everyone with a British accent “Ole Brits.” He calls all horses “Old Nags.”

Every Sunday during football season, he drinks a cream soda sometime between 2:00 and 3:00, no sooner, no later. He buys groceries every Saturday morning, and then begins the list for the next week. He still wears jean shorts and always tucks in his shirts. He knows he’ll love movies with Arnold Schwarzenegger, Sylvester Stallone, Steven Seagal or any other action actor before he watches them. He records movies he’s watched in a notebook, which dates back to 1985. He’s never disliked a single country song. If he forgets a woman’s name, he just calls her Susan because he thinks that’s his best chance of guessing right. He even called Jill, our neighbor, Susan after knowing her twenty-five years. He sticks address labels all over his trashcan, for fear the garbage man will switch it with the neighbor’s.

But following my transplant, my routines became even more set than my dad’s. His predictable life looked like Lindsay Lohan’s compared to mine. After my transplant, every day was exactly like the previous day. Here was my schedule:

7:30 a.m.: I become semiconscious as my nurse gives me pills: Tylenol and Benadryl. Hopefully I don’t puke them up.

8:00 a.m.: The janitor is mopping my floor, cleaning my bathroom and taking out my trash. She works as quietly as she can.

8:15 a.m.: My nurse enters my room with my bag of platelets. After the transfusion, I go back to sleep, which is much easier after the Benadryl hits me.

10:10 a.m.: I become fully conscious and examine my surroundings. My breakfast tray is in the corner, already cold since it was served two-and-a-half hours ago. I wasn’t going to eat it, anyway.

10:15 a.m.: The doctors make their rounds and we talk about my newest health problem. The doctors switch every two weeks, but they’re always excellent. My health problems also change, but they always suck.

10:30 a.m.: My parents arrive, and my dad hands me my warm-up pants, t-shirt and sweatshirt. My dad puts my left sock on for me because my abdominal muscles have weakened, and bending causes spasms. He seems to enjoy it, purposely putting it on upside down.

10:35 a.m.: I get out of bed and brush my teeth.

10:45 a.m.: I respond to emails on the computer. I look out my huge window from time to time to sharpen my people-watching skills. “What’s the weather like, Dad?” I ask.

“It’s cold as usual. Too cold for me. You can’t go out there without warm clothing, that’s for sure,” my dad replies. “And when I took my walk this morning by the river, the geese chased me again. Those are mean critters.”

11:00 a.m.: My nursing assistant takes my temperature and blood pressure, and changes my bed sheets.

11:30 a.m.: I go for my morning stroll, meaning I step on the treadmill and walk as long as I can.

11:33 a.m.: I can barely breathe. I stop walking and sit on the big chair to catch my breath. It takes at least five minutes for my heart rate to drop below one hundred beats per minute.

11:40 a.m.: I lie down and watch a DVD.

12:00 a.m.: My nurse brings me more Tylenol and Benadryl so that I can receive my red blood cell transfusion.

12:45 p.m.: My transfusion begins. Later, I may get a second platelet transfusion depending on my new blood results. My blood is taken twice a day.

2:00 p.m.: I take my afternoon nap. My mom joins me as she falls asleep in her chair.

3:30 p.m.: I wake up and watch TV. My hospital room has cable, but doesn’t get ESPN. My dad wrote a letter asking if ESPN could be made available, but the hospital administrator said it wasn’t part of their satellite package. So I watch the afternoon sitcom lineup on TBS: The Drew Carey Show, Everybody Loves Raymond, Home Improvement, Friends and Seinfeld. There are only so many movies I can watch each day.

4:00 p.m.: JD calls and we talk for a bit. “If you don’t feel up to talking, then don’t worry about it,” my brother says. I also receive a couple calls each week from friends. My relatives call much more frequently, but since those calls are strictly health-related, I make my mom handle them.

5:40 p.m.: I send everybody out of the room for my early-evening vomit.

6:00 p.m.: I brush my teeth because stomach acid erodes the enamel. I was instructed to trash my regular toothbrush and use Toothettes, which are very soft brushes. This and not walking barefoot are the two hospital rules I break outright.

6:05 p.m.: My nurse administers a dose of Phenergan, an antinausea drug—not enough to put me to sleep, but enough so that I can drift off if I want to. “I need to calm my stomach,” I say. Really, I just enjoy the feeling. My parents encourage me to take Phenergan before my vomit, in hopes of preventing it. “If I’m going to puke, then I’m going to puke,” I say.

7:00 p.m.: My dad and I watch the NBA Playoffs. Some people hate the NBA, including Hamburgers, who thinks they’re all thugs. Not me. I watch almost every game during the playoffs. Without ESPN, I am unable to see the Pistons beat the Magic after being down in the series 3-1, despite Tracy McGrady proclaiming near-victory.

8:00 p.m.: My mom tires and leaves for the night.

9:00 p.m.: I take my shower. I’m cold and depleted of energy, but I can’t evade this particular hospital rule.

10:15 p.m.: Before heading to the apartment, my dad stands at the foot of my bed watching me, stroking my toes, and says, “Sleep well tonight. I’ll see you in the morning. I love you.”

I keep my eyes on Charles Barkley and the rest of the TNT NBA analysts as my rage builds from this coddling. “Fucking get the motherfuck off me,” the rage wants to say. “I love you, too,” I manage to echo.

10:30 p.m.: Goodnight.

This schedule, varying little from day to day, was the backdrop to problems. Problems I had never heard of. Things going wrong in ways I had not known were even possible. My routine was interrupted with the beginnings of a fever and a rash which didn’t go away for six months. Maybe predictability is genetic.

Related story:
A Day in the Life of a Chemo Patient


Anonymous said...

They ARE all thugs (though strangely this does not prevent me from watching the NFL). Love,


Benjamin Rubenstein said...

Cut them some slack--they can't all be as squeaky clean as Jayson Williams.

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