door.
“You okay, sweetie?”
“Can we call Dr. Maria and ask if international travel would kill me?”
CHAPTER EIGHT
W e had a big Cancer Team Meeting a couple days later. Every so often, a bunch of doctors and social workers and physical therapists and whoever else got together around a big table in a conference room and discussed my situation. (Not the Augustus Waters situation or the Amsterdam situation. The cancer situation.)
Dr. Maria led the meeting. She hugged me when I got there. She was a hugger.
I felt a little better, I guess. Sleeping with the BiPAP all night made my lungs feel almost normal, although, then again, I did not really remember lung normality.
Everyone got there and made a big show of turning off their pagers and everything so it would be
all about me
, and then Dr. Maria said, “So the great news is that Phalanxifor continues to control your tumor growth, but obviously we’re still seeing serious problems with fluid accumulation. So the question is, how should we proceed?”
And then she just looked at me, like she was waiting for an answer. “Um,” I said, “I feel like I am not the most qualified person in the room to answer that question?”
She smiled. “Right, I was waiting for Dr. Simons. Dr. Simons?” He was another cancer doctor of some kind.
“Well, we know from other patients that most tumors eventually evolve a way to grow in spite of Phalanxifor, but if that were the case, we’d see tumor growth on the scans, which we don’t see. So it’s not that yet.”
Yet
, I thought.
Dr. Simons tapped at the table with his forefinger. “The thought around here is that it’s possible the Phalanxifor is worsening the edema, but we’d face far more serious problems if we discontinued its use.”
Dr. Maria added, “We don’t really understand the long-term effects of Phalanxifor. Very few people have been on it as long as you have.”
“So we’re gonna do nothing?”
“We’re going to stay the course,” Dr. Maria said, “but we’ll need to do more to keep that edema from building up.” I felt kind of sick for some reason, like I was going to throw up. I hated Cancer Team Meetings in general, but I hated this one in particular. “Your cancer is not going away, Hazel. But we’ve seen people live with your level of tumor penetration for a long time.” (I did not ask what constituted a long time. I’d made that mistake before.) “I know that coming out of the ICU, it doesn’t feel this way, but this fluid is, at least for the time being, manageable.”
“Can’t I just get like a lung transplant or something?” I asked.
Dr. Maria’s lips shrank into her mouth. “You would not be considered a strong candidate for a transplant, unfortunately,” she said. I understood: No use wasting good lungs on a hopeless case. I nodded, trying not to look like that comment hurt me. My dad started crying a little. I didn’t look over at him, but no one said anything for a long time, so his hiccuping cry was the only sound in the room.
I hated hurting him. Most of the time, I could forget about it, but the inexorable truth is this: They might be glad to have me around, but I was the alpha and the omega of my parents’ suffering.
Just before the Miracle, when I was in the ICU and it looked like I was going to die and Mom was telling me it was okay to let go, and I was trying to let go but my lungs kept searching for air, Mom sobbed something into Dad’s chest that I wish I hadn’t heard, and that I hope she never finds out that I did hear. She said, “I won’t be a mom anymore.” It gutted me pretty badly.
I couldn’t stop thinking about that during the whole Cancer Team Meeting. I couldn’t get it out of my head, how she sounded when she said that, like she would never be okay again, which probably she wouldn’t.
Anyway, eventually we decided to keep things the same only with more frequent fluid drainings. At the end, I asked if I could travel to
“You okay, sweetie?”
“Can we call Dr. Maria and ask if international travel would kill me?”
CHAPTER EIGHT
W e had a big Cancer Team Meeting a couple days later. Every so often, a bunch of doctors and social workers and physical therapists and whoever else got together around a big table in a conference room and discussed my situation. (Not the Augustus Waters situation or the Amsterdam situation. The cancer situation.)
Dr. Maria led the meeting. She hugged me when I got there. She was a hugger.
I felt a little better, I guess. Sleeping with the BiPAP all night made my lungs feel almost normal, although, then again, I did not really remember lung normality.
Everyone got there and made a big show of turning off their pagers and everything so it would be
all about me
, and then Dr. Maria said, “So the great news is that Phalanxifor continues to control your tumor growth, but obviously we’re still seeing serious problems with fluid accumulation. So the question is, how should we proceed?”
And then she just looked at me, like she was waiting for an answer. “Um,” I said, “I feel like I am not the most qualified person in the room to answer that question?”
She smiled. “Right, I was waiting for Dr. Simons. Dr. Simons?” He was another cancer doctor of some kind.
“Well, we know from other patients that most tumors eventually evolve a way to grow in spite of Phalanxifor, but if that were the case, we’d see tumor growth on the scans, which we don’t see. So it’s not that yet.”
Yet
, I thought.
Dr. Simons tapped at the table with his forefinger. “The thought around here is that it’s possible the Phalanxifor is worsening the edema, but we’d face far more serious problems if we discontinued its use.”
Dr. Maria added, “We don’t really understand the long-term effects of Phalanxifor. Very few people have been on it as long as you have.”
“So we’re gonna do nothing?”
“We’re going to stay the course,” Dr. Maria said, “but we’ll need to do more to keep that edema from building up.” I felt kind of sick for some reason, like I was going to throw up. I hated Cancer Team Meetings in general, but I hated this one in particular. “Your cancer is not going away, Hazel. But we’ve seen people live with your level of tumor penetration for a long time.” (I did not ask what constituted a long time. I’d made that mistake before.) “I know that coming out of the ICU, it doesn’t feel this way, but this fluid is, at least for the time being, manageable.”
“Can’t I just get like a lung transplant or something?” I asked.
Dr. Maria’s lips shrank into her mouth. “You would not be considered a strong candidate for a transplant, unfortunately,” she said. I understood: No use wasting good lungs on a hopeless case. I nodded, trying not to look like that comment hurt me. My dad started crying a little. I didn’t look over at him, but no one said anything for a long time, so his hiccuping cry was the only sound in the room.
I hated hurting him. Most of the time, I could forget about it, but the inexorable truth is this: They might be glad to have me around, but I was the alpha and the omega of my parents’ suffering.
Just before the Miracle, when I was in the ICU and it looked like I was going to die and Mom was telling me it was okay to let go, and I was trying to let go but my lungs kept searching for air, Mom sobbed something into Dad’s chest that I wish I hadn’t heard, and that I hope she never finds out that I did hear. She said, “I won’t be a mom anymore.” It gutted me pretty badly.
I couldn’t stop thinking about that during the whole Cancer Team Meeting. I couldn’t get it out of my head, how she sounded when she said that, like she would never be okay again, which probably she wouldn’t.
Anyway, eventually we decided to keep things the same only with more frequent fluid drainings. At the end, I asked if I could travel to
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