Chapter 6

THURSDAY

The Bat Signal

The next morning, I took the kids to school as usual (in my comfy Converse). Inside, I was incredibly anxious to hear from Dr. John, who would be getting the scans today, but I was determined to stay positive. In the car, the girls were reading their books like literary angels and the boys were fighting like rabid monkeys. Michael alleged that Patrick put a booger on him, an accusation that Patrick vehemently denied, and Jack started screaming that they were both disgusting. The girls were now whining, “Shut up!” which is equivalent to a curse word in my household. I didn’t have my normal instinct to yell at them to pipe down and threaten to make them all walk to school. I just wanted to grab them, boogers and all, in one big, endless embrace. It wasn’t easy for me to say good-bye to them at school drop-offs that day, but at the same time I wanted to rush back home to Jim. I’d let him sleep, his favorite activity, because I knew he was emotionally drained, holding it together for me. Now it was wake-up time. I didn’t want to be alone when I got any news, good or bad. John would surely call at some point this morning, but it was an hour earlier in his time zone, so it would have been only 7:45 a.m. in Milwaukee.

I checked my messages when I got back to my office and was surprised to see Marita’s name on my iPhone voice-mail list several times from the night before. A wave of guilt washed over me. After I had called her the day before with an urgent prayer request, I’d ended up going out on the town and stumbling around Manhattan in high heels like a common dock whore. Jim walked into the office half asleep with a cup of coffee in his hand.

“Well, call her now!” Jim might be really private about his spirituality, but he knew the direct line to heaven was what this situation called for, and my family had the contact number.

Early on when Jim and I were dating, I mentioned to him that my mom was praying for a good outcome to a big audition he’d recently gone on. Jim responded with a polite but confused look on his face: “Gee, thanks.” I know he was thinking, Uh, can we keep your mom’s voodoo out of my career? Of course, after he got the callback, he casually mumbled, “Uh, Jeannie, could you have your mom, you know (cough), pray for my callback?”

I dialed Marita. She picked up. “Marita. It’s Jeannie!”

“Oh, Jeannie, Jeannie, Jeannie!” She had this way of exuding pure comfort. “Don’t you worry, Jeannie! The Lord has you in the palm of his hand and you are going to be just fine. I have the entire Eastern Seaboard praying for you. My friend has a radio show and she is spreading the word for a special intervention for you.” This was like the Catholic equivalent of putting out the Bat Signal.

Marita was no stranger to medical crises. She’d had a number of run-ins with the grim reaper, yet she’d survived them all. She was so well-versed in various diseases that she even had a favorite hospital: “Jeannie, Mount Sinai is the best!” What was with this family and Mount Sinai? Mount Sinai was somewhere on the Upper East Side past One Hundredth Street; it might as well have been on the other side of the planet. At that point I didn’t care about the best hospital; I wanted the closest hospital where they would tell me what was wrong with my brain and I could move on.

Since I gave birth to all my children at home, I knew very little about New York hospitals. I was confused by the notion that there would be a dramatic difference in quality between institutions where sick people went. A hospital was a hospital, and I didn’t like being in any of them.

She continued, “And, Jeannie, I called my friend at Mount Sinai. I know everyone there…” Marita really was like the mayor of Mount Sinai. I pictured her walking down the halls, shaking hands with everyone and kissing babies in the labor and delivery ward. “… Now she’s in pulmonology, but she knows a lot of great people in neurology…” She then went on to list about five names of doctors she wanted me to call. Jim was furiously writing them down as I repeated them out loud. “They have the top neurology department in the city. People come from all over the world. Mention my friend’s name and I’m sure they will get you in!” I wasn’t trying to make a restaurant reservation. My heart sank at the prospect of calling more doctors. Especially ones with world-class waiting lists.

“Marita, thank you so much, but Mount Sinai Hospital is really far away, and I already have appointments on the books with a couple of other great surgeons at a hospital near NYU, which is much closer to where we live…” I tried to be gentle. She was in her eighties.

“Jeannie! You have to go to Mount Sinai; they are tops. They took care of me, they took care of Beth, they were so good to Annie…” She meant well, but this advice was giving me anxiety. I didn’t want to have to think about getting “the tops” neurosurgeon. Thinking that way made this too real, and some small part of me was hoping it would end up being nothing and we could quickly go back to life as usual. Marita may well have been giving me the best medical guidance yet, but because of my state of mind, I couldn’t hear it. I am a compartmentalizer. I was calling her for one thing (prayer), and I was calling John for another (science). I didn’t need another referral, another receptionist, another appointment. I needed a prayer warrior. “Marita, thank you so much for all of this. I have not told my mom and dad about anything yet because I really don’t know how bad it is, but my friend who is a neurologist is going to call me today and give me some advice on how to go about dealing with this. As soon as I find out any more information, I am going to call you. I just need prayer right now.”

“Jeannie, we are going to keep praying and praying and praying.” I hung up feeling uplifted. I pictured this prayer chain happening on old-fashioned phones, like “The Telephone Hour” in Bye Bye Birdie, but instead of teens spreading gossip, the prayer warriors were spreading Hail Marys. There was this whole faith community out there that didn’t know me at all, but they were for sure storming heaven. I could feel it.

My own experience with faith is complicated. I am too rebellious, hardheaded, and scattered to have ever been “religious.” Rules and regulations scare me and make me run for the hills. I grew up Catholic, so that’s what I was. I went to public school. My family attended church every Sunday because that’s what Catholics did, and my mom made us, so we went. It was ingrained in me as a regular part of life. As a child, I never felt “damaged” or “shamed” by my Catholicism; it was just a normal part of my identity.

At home, my father was a secular intellectual, always writing a story for the paper, reading a thick novel, or lecturing us about how Reaganomics was going to be the end of civilization. My dad rarely spoke about God, although oddly enough he was known to play a mean rendition of “He’s Got the Whole World in His Hands” on the banjo at the occasional Newman Center family program on the University of Wisconsin–Milwaukee campus. I guess being in a Catholic ministry center surrounded by a secular university made it more his thing. My mother, on the other hand, was constantly praying. She kept an enormous statue of the Virgin Mary in the living room, surrounded by much smaller family photos. If she wasn’t dancing around the house to praise music, she was telling us, “The Lord is working!” or “Offer it up!” If we had our feelings hurt by a kid at school, she would say, “Let no weapon formed against you prosper!” or some other oddly poetic tidbit of biblical wisdom. Sure, I was painfully embarrassed of her because absolutely no one else’s mother acted anything like she did, let alone had an altar in their living room, but growing up with her as my mom, something happened to me, no matter how much I tried to run away from it or hide it. God was a real character in our house. He lived there. He was always with us and always protecting us. Even though I never went to Mass when I was away at college, I remember being alone and having pretty extensive dialogues with God about exams, boys, and money problems. If I was doing something I shouldn’t, I’d have the thought, Hey, God, don’t tell my mom I’m here. I was more worried about her judgment than His. God was my therapist and my consigliere. I was always aware He was there. Even if I found a good parking spot, I’d be like, “Thanks, dude.” I had become a unique blend of my crazy spiritual mom and my pragmatic lefty dad. A semisecular spiritualist. In my current situation, Dad would have called John, and Mom would have called Marita. I called them both.

As I got older and life started to get a whole lot rougher, my relationship with God matured as I did. When I moved to New York, I started going to Mass regularly again. I was far away from family, and a church smelled like home. I realized that after all those years away from it, I felt a deep connection to the rituals. Being inside a Catholic church anchored me and kept me from getting lost in the thousands of shiny object distractions in Manhattan. No one was making me go to Mass anymore; I wanted to go. When I got married and had kids, things got way harder. Jim was on the road. I was jealous. I had miscarriages that brought with them emotional pain like I’d never experienced. God became less of a buddy and more of a mystic all-knowing presence that was there to remind me, “This is all part of my plan, even though it seems to suck righteously.” And I did believe in miracles. I’d witnessed unexplainable medical healings in people close to my family that were attributed to prayer. I’d been the recipient of my own significant miracle, which I’ll tell you about when we know each other better. So, when Marita told me her friends were praying for me and that whatever was wrong in my brain was going to be all right, I believed it 100 percent. After speaking to her, I felt like there were angels around me. I may have been in limbo, but I had a team of celestial beings breaking me out.

The Man with the Plan

My phone rang. It was John. It was only 8 a.m. where he was. I looked at Jim and announced, “It’s John! He’s probably calling to say he got the FedEx!” I picked up. “Hey, John!” Apparently, he’d received the scan at 7 a.m. and drove to his hospital first thing to look at it. He was not one to mince words.

“Jeannie, I’m looking at your scan here. It’s not good.” He texted me a screen shot: the inside of my brain with an absolutely enormous tumor in it.

“Oh my God!” I said. I put him on speaker and showed the phone to Jim. The blood drained out of his face. John continued. “Do you see that area to the left of the tumor?” It was the first time I’d heard the word tumor used. Until now, it had been a “mass,” which seemed less real. He was telling me to look at the area around it, but all I could see was that giant bulb. “… That’s where your brain stem should be, and it is almost completely compressed to the side.” I looked at the black-and-white image in disbelief. This horrific view into my own skull revealed there was a huge blockage in the part of my brain that connects the nerve signals for the motor and sensory systems to the rest of my body. This couldn’t be good.

In Jim’s comedy, he characterizes himself as lazy. He is anything but. Jim is always in motion. Sure, some of that motion might involve climbing in bed for a nap or sticking food in his mouth, but he’s continually moving forward to the next task. This man, ever consumed with his next project, was suddenly a statue next to me. Not defeated, just frozen.

Tick, tick, tick…

Mount Sinai Department of Radiology

I explained to John that the two neurosurgeons I was referred to said to bring the scan to my first appointment in May. “May?” John replied with uncharacteristic panic in his voice. “This can’t wait three weeks. You need to get into the OR right away.”

“But I need a doctor to go to the OR!” I was practically shouting. “And their first available appointment is not until May 8!”

John was steady, firm, and decisive. “If you were here, I would send you to neurosurgery right now. You need a plan. You need a plan today.” I had no plan. Even calling a doctor and getting past the gatekeepers seemed beyond my capabilities.

“John, give me a plan!”

He didn’t even pause. “Okay. Find the hospital with the best neurosurgery department in the city, go to the ER at that hospital with your scan. Tell them you have headaches and feel like you’re passing out.” It wouldn’t be a lie. I did have chronic headaches (that I had explained away), and I certainly felt now as if I were about to pass out from fear. I pictured myself walking into a dirty New York City ER and having some sleep-deprived intern cut open my skull with a rusty butter knife.

“I can’t go to the ER with a brain tumor!”

John was focused and direct. “Go to the ER at the best neurosurgery hospital in New York with that scan. They will get you to the top guy.”

Tops. I thought of Marita. I knew where we had to go. “Jim, get your coat. We’re going to the emergency room at Mount Sinai.”

The Parting of the Red Sea

Jim and I were speeding up FDR Drive in a taxi. Jim was texting people to make sure the school pickups were covered. We had a plan. At least the first part of a plan. Go to the ER with the scan. See the top guy. Then, wing it. I imagined us walking cold into the ER, and it made me shudder. I had to call my doctor in New York. We needed an inside push. I’d forgotten Marita’s friend’s name. Could I just tell them I knew Marita Haggerty, the mayor of Mount Sinai?

Then it suddenly occurred to me that my own Dr. Hops was somehow affiliated with Mount Sinai because I’d seen the logo on the computer screen in her office. In all the chaos, I’d never followed up to tell her what was going on. It dawned on me that if she hadn’t forced me to get my ear checked out… I shuddered to think of it. She could be my inside push. I called her office. They informed me she was on vacation and couldn’t be reached, and would I like to leave a message for the doctor on call? “No!” I hung up and called Dr. Godin. I got Kurt. “Kurt, it’s Jeannie Gaffigan. I’m going to have to cancel those May appointments with the other neurosurgeons; that’s too long to wait. I’m on my way to the ER at Mount Sinai.” Kurt was stunned.

“What? Don’t go to the ER. Just wait twenty minutes, and Dr. Godin will call you.” I wasn’t having it. Poor Kurt.

“Too late. I’m almost there. My friend John, who loves me and is a neurologist, told me to go to the ER. And I’m going. Bye!” I looked at Jim. “Gotta stick to the plan.”

We passed the old-fashioned Pepsi-Cola sign across the East River in Queens. It reminded me of Mimi, my mom’s grandmother. I never met her, but every time my mom comes to New York City and we are on the FDR, she brings up being in Mimi’s Tudor City apartment as a child and looking out at that sign beyond the water. My mom’s memory was now my memory. I wondered if I was going to be able to have memories anymore. What would that be like? Not to have memories? My kids might not have a mom who gifted them her memories. My phone rang again, jolting me out of the spiral.

It was Dr. Godin. “Jeannie, I had no idea that you couldn’t get into those doctors until May. You should have called me.” Dr. Godin was really concerned. I think he thought my suddenly going to the ER was an impulsive, ill-informed decision.

“I’m almost to the ER at Mount Sinai,” I said abruptly. My manners went out the cab window as I was in full fight mode and flight mode at the same time. Truth is, it never even crossed my mind to call him back to get in earlier.

“You don’t have to go to the ER. I know people at Mount Sinai too. I just referred you to the other hospital because it was close to you. I’m sure I can get you an appointment at Mount Sinai with one of my colleagues by tomorrow, or Monday.”

“I appreciate that, but right now, I’m going to the ER. My best friend John told me to!” I realized that I was actually looking forward to going to the ER. I had a plan. In this whirlwind of confusion and stress, for a moment I felt like I was not falling. The appointments that may or may not happen did not seem serious enough for my taste. I may not be a doctor, but I know the E in ER stands for “emergency,” and I felt like I had an Emergency with a capital E on my hands.

“Look, I am going to call my colleague at Mount Sinai and tell her that you need to see her as soon as possible. I’ll call you right back.” I remembered he had not actually seen the scan, just the mysterious report.

“Great,” I said. “I’ll take your call in the ER.” I thought of my kids misbehaving in the car that morning. Was I being a baby?

My kids. They were all in school like it was any other day. Completely unaware that their lives were about to be upended. What was going to happen to me? To all of us?

Dr. Godin, who now was heavily involved in my saga, called right back: “Okay, I spoke to my colleague, a neurosurgeon. She’s actually in Florida right now.” I pictured her getting interrupted on the golf course by the call. “She can see you on Monday.” I probably didn’t have until Monday. John had told me a story about referring one of his patients to neurosurgery; they took a “wait and see” approach, and the guy had a stroke over the weekend. I marveled as I recalled the cold, clinical responses I had received when I tried to make those initial appointments with the neurosurgeons. What was going on there? Maybe there are a ton of folks making casual checkup appointments in neurosurgery departments. I just accepted it. When I heard “May,” I was like, “Okay, guess I’ll find out in May.” With the knowledge I had now, surely just accepting that appointment wait time could have cost my kids a mother.

Dr. Godin continued, “She also said she was going to advise someone in the neurosurgery department to call you today. I gave her your number. I hope you don’t mind.” I didn’t mind at all. Dr. Godin was on the team. I thanked him profusely and continued my race up the FDR to the ER. Jim was staring out the window. I wondered what was going through his head. It was probably as scary as what was growing in mine.

An unknown number popped up on my phone. I was getting so many calls in the cab, I could see the driver in the rearview mirror piecing together the drama of the drive. He began the ride not realizing it was a life-and-death journey, but by this point I saw only empathy in his eyes. He clearly understood the gravity of the situation by now. “Hello?” I answered the phone. I hoped it wasn’t a school nurse notifying us about a lice outbreak or a kid with a broken limb.

“Hi, is this Jeannie?” Yes. Not Janine. Good sign. “This is Leslie Schlachter from the neurosurgery department at Mount Sinai. One of our neurosurgeons called from Florida and said you might have a problem that is in need of immediate attention?”

“Yes, I do,” I said casually, as if this complicated chain of events wasn’t unusual. “I’ve actually been expecting your call.”

“Great. Where do you live?”

“I live downtown, but right now I’m about a block away from the Mount Sinai ER.”

“Really?” said Leslie. “That’s great; c’mon up to Eight West. Dr. Bederson just happens to be here because his surgery just got delayed.” Bederson? The one Beth told me to see. The “tops.”

I turned to Jim. “We are not going to the ER! We are skipping that part of the plan and going straight up to the top guy! His name is Bederson.”

Jim was googling like mad on his phone. “Jeannie, Dr. Bederson is the chairman of neurosurgery at Mount Sinai!” You could almost hear the Hallelujah Chorus. The Bat Signal was working.

“This is God!” I exclaimed. The cabdriver looked back with a smile to indicate his relief that he might be participating in a happy ending. I imagine after he dropped us off, he probably pulled over to the nearest church and converted to Catholicism. “The plan” was unfolding. Maybe the world was spinning our way. We jumped out of the cab and took the elevator up to Eight West: Neurosurgery.

There were two receptionists waiting at the door of Dr. Bederson’s office like greeters at Buckingham Palace. “Come in, sit down,” one said. “Do you have your scan?”

“I have four!” I said, showing off the multiple copies I had obtained for my soon-to-be-canceled preliminary consultations.

“We just need one.” She took my scan and disappeared deep in the office. I handed the other woman my insurance card. “Thanks,” she said. At that moment a tall, blond woman in a lab coat appeared.

Her height was overshadowed by her beauty and her beauty was overshadowed by her warmth. “Hi, I’m Leslie!” She was wearing a funky necklace. It was a sunburst and some other shape. She smiled. “Dr. Bederson is ready to see you.” I was astonished that there was no wait.

“Don’t I have to fill out a stack of forms?”

“No, that’s not necessary now, c’mon in. Dr. Bederson has surgery in forty-five minutes. He normally never sees patients on Thursdays. I guess you got lucky.”

Jim and I looked at each other. We knew that luck had nothing to do with it, unless luck parted the Red Sea for Moses. We walked right into the office of the top neurosurgeon in New York City. No appointment, no wait, no forms. And there, in front of that big polished mahogany desk, stood Dr. Joshua Bederson, chairman of the Department of Neurology at Mount Sinai Hospital. The man who would save my life.

Leslie C. Schlachter, PA, and Joshua Bederson, MD

Mount Sinai Department of Neurosurgery