You’ve got really thick eyebrows, I thought. Should I tell you to trim them, or would that be rude?
I heard him say something about hematology. I didn’t know what that meant. “So what do I have?” I asked.
“Well, the white—”
“Stop, stop. Cut to the chase. What do I have?”
Dr. Eyebrows took a breath. “We don’t know yet. Your blood looks very similar to what we see in leukemia. But it could be that your bone marrow is shutting down.”
I thought bone marrow just sat there. I wasn’t sure what he meant by “shutting down.” It certainly didn’t sound good.
“Okay,” I said. “What makes you think that?”
The production of both white and red blood cells was very low, the doctor explained. My hemoglobin level was three.
“What is it supposed to be?”
“For someone your age, about fourteen or fifteen.”
I tried to calculate fifteen divided by three. I couldn’t.
My count of platelets, the cells in blood that make it clot, was also dangerously low, the doctor said, and the white cells being produced were all immature.
“Well, I can be immature, so I guess that makes sense.”
Dr. Eyebrows spoke in a stern voice. “Kurt, you need to be serious. We have a lot of things to do, and we have to do them very quickly.”
I nodded. “Okay, I’m sorry. So why is this happening?”
Before he answered, the doctor said, he needed a medical history. He focused on the last few months, telling me to describe every problem I’d experienced. I recounted the nausea, the dizziness, the weakness, the tremors, the weight loss, the bruises that wouldn’t go away.
“Why didn’t you call your doctor about this?” Dr. Eyebrows asked.
“I did.”
Dr. Eyebrows hesitated. He clearly hadn’t expected that answer. “What did he tell you?”
“That everything was caused by stress.”
Another pause. “What did he say about your medication blood levels?”
“Nothing. He only checked my levels when I first saw him.”
“Why didn’t you have them checked again?”
“He never told me to. In fact, whenever I asked if the medication might be causing these problems, he told me no.”
“He said no?”
“Well, not exactly. He told me that he’d never heard of anyone having those side effects from the medication before.”
The doctor stopped speaking. His expression harbored some inner disquiet. I was ready to yell at him if he started being mean to me. What had I done? Why was he angry?
“Did anyone ever tell you that your medications could cause problems with your blood?” he asked. “Did anyone tell you there were symptoms you needed to look out for?”
“No. I remember when I went on Tegretol I read the package insert, and it mentioned something about blood, but I don’t remember what it was. I never read the insert for Depakene.”
“How long have you been on your current dosage?”
“I don’t know. Maybe three to five months?”
The doctor seemed to calculate something in his head.
“Look, we’re talking around everything,” I said insistently. “Just tell me. Is the medication killing me?”
“It could be causing this problem.”
I heard my mother choke back a sob.
“Which one, the Tegretol or the Depakene?” I asked.
“We don’t know,” the doctor said. “It could be either.”
Okay. “So, what, am I allergic to both of them?”
“No. This is going to be hard for you to hear, but you’re going to have to make a lot of decisions very quickly, so you need to understand what’s happening.”
“Okay, tell me.”
“Both of your medications are at very toxic levels. They’re not medicines anymore. They’re poison. What your neurologist did is unforgivable. I’m sorry to be this blunt, but you have to know the truth. If we don’t move quickly, you could die.”
* * *
—
The news bounced off me, leaving no emotional impact other than satisfaction; I had told Craddock my weight loss wasn’t from stress. That stupid jerk, I thought. I had been right. He had been wrong.
Confused by my blasé response, my mother asked if I understood what I had been told.
“I get it,” I replied. “I mean, I don’t know exactly what’s happening, but it sounds like nobody else does either. Whatever it is, it is.”
My fatalistic indifference disturbed my mother, but she realized that, for the moment, the doctors needed her help more than I needed emotional repair. She asked Dr. Eyebrows if they could speak in the hallway. There, the doctor raged about Craddock, tossing out words like “incompetent” and “malpractice.” The records Craddock had sent to Strauss included only a single blood test—incomplete at that and taken during my first visit—and the medical team at Northwestern had assumed some office clerk had forgotten to ship the rest. Dr. Eyebrows said he had called Craddock’s office seeking the other blood tests on an urgent basis but never heard back.
“We have no recent records,” Dr. Eyebrows told my mother. “We’re flying blind.”
Nicholson. My mother said there was another neurologist, one in Dallas whom I hadn’t seen in many months, but at least he would have old blood tests. That doctor had drawn blood on at least two occasions, maybe more, she said.
“Please call him and ask him to send the records immediately,” Dr. Eyebrows said. “Anything we can get might help.”
She poked her head into my room to check on me. Seeing I had fallen asleep, she walked to the nurses’ station on my floor in search of a phone; the staff knew what was happening with me and offered my mother every support as they brought her to a desk where she could call Nicholson. The secretary answered, and my mother quickly explained the circumstances, stressing that she needed to speak to Nicholson urgently.
“Hold on,” the secretary said.
For five minutes, my mother waited, tears streaming down her face, hoping that Nicholson would answer any second. Finally, he clicked onto the line. Speaking rapidly, my mother spelled out the dire prognosis and explained why the Northwestern doctors wanted my old blood records. Nicholson interrupted several times, demanding information he didn’t need and she didn’t know.
“All that matters right now is we need you to send Kurt’s blood tests,” she said.
There was a pause. “They’re wrong,” Nicholson said, referring to the Chicago doctors.
My mother thought she must have misheard him. “What?”
“They’re wrong,” Nicholson repeated. “It’s a lab error.”
She wanted to scream at him, to call him inhuman for arguing about medical tests he hadn’t seen with a mother whose son could be dying. But the blood records came first. She asked for them again.
“I’ll see what I have,” Nicholson replied. “Call me back later.”
Then he hung up.
Over the next hour, my mother met with other doctors to update them on Nicholson and find out if they had any more information about my condition. A hematologist—a doctor who specializes in diseases of the blood—told her that they would soon perform two tests, a bone marrow aspiration and a bone biopsy. She cried at the news; she knew both could be excruciating and worried that I wouldn’t bear up under the onslaught of health problems.
She called Nicholson, but his assistant said he wasn’t available. Thirty minutes later, she tried again. He had located the blood tests, he told her, but insisted again that the Northwestern doctors were wrong. My mother begged him again to just send the records. She told Nicholson that the doctors considered the situation an emergency, were about to perform the painful bone marrow test and bone biopsy, and were insis
ting that the old blood analyses might be helpful in reaching a diagnosis.
“All Kurt has to do is to grow up,” Nicholson said to the mother of a dying son. “Maybe after he has a bone marrow aspiration, he’ll grow up.”
An audio diary from
ELVA EICHENWALD, 1982
A couple of days after Kurt was admitted to the hospital, they came back with the fact that his bone marrow was suppressed, and I was scared. I was so scared. Kurt did not look well. He had lost so much weight. He did not behave right. He seemed to be not well. I was very afraid for him, of course, realizing that he could have leukemia, or bone cancer, or aplastic anemia, or a reaction to the drug, and I was alone. I was very alone in a strange city with people I didn’t know.
[After the “Maybe Kurt will grow up” phone call with Nicholson] I never spoke to that man again. However, everything that he has caused us and all the pain and the misery, both to Kurt and to me—I will sometime; I will talk with him someday, because I think it’s the only way I can be free from him.
I tried so hard to bear up under all of this. There were so many painful procedures that Kurt faced. When I could slip away, I spent a number of hours praying in the hospital chapel. I didn’t want to lose my son.
CHAPTER TEN
A new team of doctors and nurses showed up in my room that same day. Their arrival surprised me—they were planning to do the next series of tests here? I had assumed orderlies would be wheeling me all over the hospital, from one lab to the next. Maybe they had decided to cut the travel time. They really are rushing, I thought.
“Hi, everybody,” I said.
One doctor introduced himself while another person handed me a sheaf of papers to sign. Authorize this, informed consent that. The physician kept speaking as I scrawled my signature on each page, having no idea what permission I was granting. I didn’t care. I heard the word “aspiration” and glanced up.
“I’m sorry, what are we talking about?” I asked.
He apologized. That meant a lot; no doctor had ever expressed regret to me for anything over the past two years. He started his explanation again—they were going to perform two tests, a bone marrow aspiration and a bone biopsy.
I knew the word “biopsy.” “Is there a tumor?”
“Not that we know of.”
Then why do it? I didn’t care enough to ask.
“I want you to know, this is going to be painful,” the doctor warned. I would have a lot of choices to make in the next twenty-four hours. That meant they had to avoid using a sedative that ran any risk of knocking me out or triggering a seizure. While they would use a local anesthetic, they had to keep the dosage minimal. My neurologist was calling the manufacturers of my anticonvulsant, the doctor explained, but no one knew what might happen when another drug was added to toxic levels of medications already causing significant problems.
I remembered a question I had forgotten to ask earlier. “How toxic am I on these medications?”
“I’ve been told the levels are very toxic.”
“Okay. But what does that have to do with an anesthetic?”
“I’m sorry. This really isn’t my field of expertise.”
“But someone must have told you something. I need to know.”
The physician bit his upper lip. “Your doctors have never seen levels like this.”
Another person spoke. As far as I knew, he had not yet introduced himself, but he was wearing scrubs, so I assumed he was a doctor.
“Your liver metabolizes your medications. If we add more drugs, it’s just going to make your liver work harder. We don’t know yet what that would do to your anticonvulsant levels, and we don’t want to risk triggering a seizure, which would require more medicine.”
“So if you use an anesthetic, I might get more toxic?”
“We don’t know,” he repeated. “We’re going to use local anesthetic but not a lot. So you need to be prepared. This is going to be painful.”
The other doctor spoke. “Now, you must stay perfectly still. I’m going to inject a needle through the bone to get a marrow sample. Then we have to use another type of needle for the bone biopsy.”
I wonder why he’s switching his pronouns, I thought absentmindedly.
For the first time, I noticed the work being performed by the rest of the team. No conversation, every face serious. A woman removed wrapping from a tray. At some point, I noticed a sealed bag with a needle in it. By my guess, it was six inches long. Then I saw another device that looked like a giant corkscrew, only straight.
“Mom?” I said. She was nearby, behind all the staff dashing about. I assumed she had been asking plenty of questions herself that I hadn’t heard.
“Yes, Kurt.”
“I want you to leave before they do this.”
“I am. They told me I can’t stay.”
“Good.” I looked around until I could see her face. “I’m going to be fine,” I said.
“I know. Just know, I’m right outside. I love you.”
“Love you too. I’ll be fine.”
I closed my eyes. I needed to prepare myself. I thought of Daniel Nevot, a war hero who fought in the Free French Forces during World War II and who later coached at St. Mark’s, the school I attended as a kid. We called him Monsieur Nevot, and I considered him the toughest man I ever met. I’d heard his stories from others because he never discussed his exploits. One anecdote stuck with me: He and two others disguised as Arabs infiltrated an Italian garrison. He was captured but somehow convinced the enemy troops that they were surrounded by French fighters. Then he and his friends grabbed machine guns and held the soldiers prisoner until French reinforcements arrived.
When I was in first grade, Nevot ran a physical education class for a rambunctious group of six-year-old boys and frequently required us to run half a mile on the track. I despised the workout—I wasn’t a runner. After the first lap, I always wanted to quit but knew that was not an option. Instead, every time I thought, This is now. You hate it now. Soon it will be a memory. Keep running; soon it will be a memory.
The doctor told me to roll onto my stomach. Soon it will be a memory. I gave silent thanks to Monsieur Nevot.
“Okay, Kurt,” someone said. “Grab the headboard. Don’t let go no matter what. Remember, hold perfectly still.”
“Okay.” I gripped the board tight.
A woman told me they were going to inject anesthetic. Given that they had warned the amount was going to be limited, I wasn’t sure why they bothered. Afterward, time passed and someone pinched the spot.
“Did you feel that?” someone said.
“I know you did it. But it didn’t hurt.”
Someone wiped something onto my back.
“All right.” I recognized the voice—it was the first doctor on the team who had spoken to me. “I’m going to insert the needle. Remember, you can’t move.”
“I know.”
Soon a memory.
Sudden pain. I scrunched my face and dug my fingers into the headboard. It hurt, but I could bear it. I breathed hard.
“Don’t move.”
Monsieur Nevot. Monsieur Nevot. Monsieur Nevot.
And then, it was a memory. I relaxed my hands, listening as the doctors and nurses bustled about. I didn’t ask or care to know what they were doing. I think I fell asleep.
“Kurt.”
I opened my eyes. I was still facedown holding the headboard and believed a lot of time had passed. “Yeah?”
“Now we’re going to do the bone biopsy. I don’t want you to be surprised. This will hurt. But you cannot move.”
“Got it. Give me a second.”
Soon it will be a memory. Be calm. Soon a memory.
“Okay. I’m ready.”
Something penetrated the skin over my hip. I could handle this.
&n
bsp; Sudden, excruciating pain shot through my body, the worst I’d ever felt. I gritted my teeth and pushed my fingers so hard into the headboard I’m surprised it didn’t break. I gasped.
“I know,” the doctor said coolly. “Don’t move.”
Monsieur Nevot. Monsieur Nevot. Monsieur Nevot!
I couldn’t take it. I never knew there could be such agony. In my mind, I saw the giant corkscrew in my back, twisting into my hip.
Monsieur Nevot.
I started crying.
“Don’t move,” the doctor said. “Almost done.”
And then it was over. I took several deep breaths. It’s a memory. I couldn’t believe how painful that had been. It’s a memory. I didn’t move but hadn’t let go of the headboard yet. No one spoke.
Then I heard it. A single soft word in a lilting, apologetic voice. “Kurt…”
No no no no no!
“…we didn’t get the sample we need.”
Wait, no. What? Wait—
“We need to do it again.”
“No, wait! Give me a second! Stop, stop, stop! I need to…just get ready!”
“It’s better if we just do it now.”
“No, just give me a second!”
Monsieur…
“Hold still.”
Nevot…
Agonizing, nearly unbearable pain assaulted me.
Monsieur…No, stop! Stop!
The tool penetrated the bone. I pictured it again in my mind’s eye, digging into my hip. I made a noise, a combination of a soft scream and a sob.
“Don’t move.”
In my imagination, I saw the metal burrowing into bone, the straight corkscrew now curved, with the doctor bearing down as he rotated it into my back as if it were a bottle of wine.
Oh, God, if I have a seizure. The thing would break off. It would shatter my hip. Maybe they would never be able to remove it.
Did they think about that? What if I have a seizure? Wait. One’s coming. It’s coming! It’s coming! It’s going to kill me!
“I’m going to have a seizure!” I screamed.
A Mind Unraveled Page 11
