The Brightest of Bright Moments Part Three
by Steve McGill
None of my family members were compatible bone marrow donors. Dr. Schwartz sat down with me and my parents again a couple days later and explained the experimental treatment he was going to try instead. The plan was to intravenously feed me serum from the blood of a horse twice a day for four hours at a time each time, for eight days. The horse serum was called anti-thymocyte globulin (ATG), and the idea was for the ATG to reactivate the bone marrow so that it would produce blood cells on its own again. This form of treatment was only about three years old at the time, and had been used in the United States for only one year. Its success rate, Dr. Schwartz said, was 40/60. Which meant I had a 40% chance of recovering. Still, his calm demeanor and simple explanation kept me calm. “You’re the doctor,” I said. “I trust you.”
[am4show not_have=’g5;’]
[/am4show][am4guest]
[/am4guest][am4show have=’g5;’]
My room was on a wing with a bunch of little kids, as there were no rooms available on the oncology ward, where Dr. Schwartz preferred me to be. My roommate was a little 5-year-old boy who would beg for Raisin Bran every morning for breakfast. I remember the nurse calmly saying to him one time, “We’re out of Raisin Bran. Would you like some Froot Loops maybe? Or Frosted Flakes?” The boy slapped the table and declared, “I want Raisin Bran!” I felt like I had entered some kind of underworld.
One of my nurses on the ward, Roz, quickly became my favorite. Being a big reader and deep thinker, I liked engaging in intellectual conversations, especially ones that included matters of the spirit. With Roz, such conversations came easily. I had my copy of my favorite novel, The Idiot by 19th-century Russian novelist Fyodor Dostoyevsky, on the table where I kept my belongings. When Roz saw it, she remarked that she was quite impressed that I was reading such a dense novel at such a young age, which sparked a discussion about love and marriage and kindness that I don’t remember the details of, but that I do remember was quite enriching and refreshing. Nowhere in the outside world could I engage in such stimulating conversation without it being some kind of big deal or making me feel weird in some way.
I came to look forward to my nightly conversations with Roz, as they gave me space to ponder the big questions of life to a degree that I’d never been able to before. It seemed like the hospital itself, despite the fact that I did not want to be there, was a place where it was easier to be my naturally curious, inquisitive self. In a setting where death is knocking at the door of every patient’s room, talking about life and death didn’t feel out of place or awkward or depressing. It felt, instead, as normal as talking about the weather, which I found to be quite liberating.
That’s why I had a bit of a tantrum on the third day of my stay, when an orderly came to my room while my parents were there and told us a bed had been freed up on the oncology ward, so it was time for me to move. Roz was going to be my nurse that night, so I didn’t want to leave, despite how annoying my Raisin Bran roommate was. I huffed and pouted and complained that this was not fair, that I should have a choice in the matter. My parents explained that I would like it better on the oncology ward because there were more kids over there who were my age. I heard them but I didn’t. What they didn’t know was that the only reason I was crashing out was because I would miss my talks with Roz.
On my first day on the oncology ward, I took a walk across the sixth floor to my old stomping grounds in hopes of properly saying goodbye to Roz. She was there, and we talked briefly. She assured me that I would love the oncology ward once I got used to it. I thanked her for all the cool talks, and we parted. When I returned to my room, a nurse at the nurse’s station stopped me at the door, pointed a pen at me and said, “Where have you been?” I stammered something about visiting one of my nurses on the other ward, to which she responded, “Never leave the ward without telling one of your nurses. We need to know where you are at all times.”
I profusely apologized and promised it would never happen again. This nurse, Ellen Tracey, would go on to become one of my favorite nurses in the next couple of weeks, and she remains to this day one of the people at CHOP to whom I am forever grateful. Despite how stern she seemed when we first met, she ended up being the most cheerful, upbeat person in the whole building — at least from my perspective. At the time, a pop song by Elton John was popular on the radio, called “Kiss the Bride.” In the beginning of the radio version of the song, before the music started, a kid’s voice said, “Hit it Elton!” And then the bass, drums, and electric guitar boomed out the opening notes. So, whenever Ellen came into my room, I would say, “Hit it, Ellen!” And she would throw her hands in the air and shout, “Yeah!” It was silly and it was stupid but it was funny, and it made me feel better.
In those early days in the hospital, before the treatment started, I stayed locked in on the hope of returning to the track as soon as possible. I did pushups and situps on a daily basis. I walked laps around the oncology ward. Exercising not only kept me connected to my dream of winning the league championship in the 110 meter high hurdles, but it also allowed me to convince myself that I wasn’t really sick. I didn’t feel sick. And now that I wasn’t trying to do anything that required cardiovascular strength, I no longer even felt tired. The ATG will get me right, I kept telling myself. Whenever I spent time relaxing in the play room, which was one room down from my room, I saw kids in there whose heads were bald from chemotherapy. One day I was taken to a different floor for a cat scan. On the elevator I encountered a hospital staffer taking another kid somewhere, and this kid couldn’t stop coughing the whole time. It wasn’t the kind of cough associated with a cold or flu. It was a deep, gargling, bone-rattling cough that echoed off the walls and made me worry that this kid might die on the spot. No, compared to these other kids, I wasn’t sick.
The treatment started one day toward the end of the first week of my hospitalization — November 6th or 7th. Dr. Schwartz prepared me mentally by explaining what the possible side effects would be: hives, fevers, chills, and severe headaches (which, he said, were very rare). He was also putting me on steroids, which would cause extreme hunger.
I ended up staying a total of three weeks in the hospital. I was discharged in time for Thanksgiving. The eight days of the treatment, and the few days after that, when Dr. Schwartz and his staff were monitoring my blood levels, were the most demanding, difficult, exhausting, terrifying, magical, mystical, heartbreaking, life-affirming, soul-crushing, wondrous days of my life. Let me explain:
[/am4show]
