Chapter 10

INTO THE WOODS

MONDAY

The next morning, Jim and I left at 6 a.m. for Mount Sinai. The kids were sleeping like babies because, well, they were babies. I thought that getting somewhere at 6 a.m. with no coffee or food would be a lot more difficult, but Jim and I sprang out of bed before the alarm even went off. Turns out adrenaline is way more of a pick-me-up than coffee and a bagel. They should put it in the lattes at Starbucks. Jim and I went into team mode. We don’t really need to talk at all or communicate with more than one-word sentences when we have a goal to accomplish: gather up the stuff, get out the door, get to the hospital on time, and get this awful thing over with. We had sitter coverage for the whole day, beginning at 5 a.m. Someone was taking the kids to school. Someone was holding down the fort. Sky was coming in at 9 a.m. to cover the office. At this point we anticipated that we would be gone for at least a week. Still, a week’s worth of emails in my in-box is a daunting laundry mountain, so Sky would have his work cut out for him. We had not told anyone but our closest friends and family what was happening. An “out of office reply” would have been difficult to execute in this situation so he would have to handle my email delicately. Jim and I held hands and jumped off the cliff into an Uber. Well, it was a curb, but it felt like a cliff. We made the hour-long journey up to Mount Sinai and the surgery check-in on the second floor.

Up until this moment I was totally consumed with my own situation. I was the only one in the world with a brain tumor that needed emergency surgery. I was the only one whose life hung in the balance and whose family was about to get turned upside down.

Imagine my shock when I rounded the corner after stepping off the second-floor elevator and saw at least a hundred people who were also in the waiting area at 6 a.m. to get surgery at Mount Sinai. I scanned all the tired, worried faces. It was impossible to tell who was the anxious presurgery patient and who was the anxious presurgery patient’s support person. I’d been such a narcissist to think I was the only person getting surgery that day. It never even crossed my mind that there would be a waiting area filled with hordes of humanity facing perhaps the biggest challenge of their lives.

After we checked in, I sat with Jim in that big hall, studying the others and imagining their stories. The old woman and her ashen-faced middle-aged son huddled together. Which one was having the procedure? How serious was it? It didn’t seem like the type of place where anyone was getting a breast augmentation. Suddenly the idea of elective surgery seemed ridiculous to me. I’ve always been the person who is totally open to the idea: “When it falls, I’ll get it lifted!” Now, as Jim and I were finally called to the check-in cubicle, and they started having us fill out the consent forms, which included a health proxy in the event of death, I started to challenge my own attitude. Why would someone sign up for this if they didn’t have to?

After the longest time of filling out the “advanced directive” forms that included many signatures exempting the hospital from all responsibilities of my accidental death, dismemberment, brain injury, long-term emotional suffering, hemorrhoids, acne, bloating, and leprosy, Jim and I had to make the “pull the plug” decision. We had just kind of shown up here after this whirlwind few days and never even discussed any of this. Now in a little cubicle, under the time gun, and in front of a receptionist whose job was to get us processed quickly, we had to make a decision like this. We had thirty-eight seconds to mull it over. There we were, filling out the ultimate form. All previous form-filling had led us to this moment. If I am brain-dead with no signs of recovery, would it be okay if Jim pulls the plug? If I am brain-dead, and the only thing keeping me alive is artificial life support, yes. I think it is unethical to be kept alive by machines. I told Jim yes, he could pull the plug. But I had one caveat before I signed my name: If Jim got remarried to some climbing, comedy fan–girl skank, my vengeful and capricious ghost would haunt him forever.

Stood Up at the Altar

I put my stuff in a plastic bag as Jim accompanied me into pre-op. I was to have two procedures and would be woken up in between. Today, Monday, an embolization procedure was going to be performed to cauterize the blood vessels feeding the tumor to reduce the risk of bleeding during surgery. They would put some wire or something into a vein in my thigh and somehow thread it up to my brain. Tuesday was the dreaded craniotomy. What had happened in my life to bring me to the point where I considered threading a tube through a hole in my femoral artery and up to my brain to glue blood vessels shut a minor procedure? A minor procedure whose possible side effects I’d just signed off on included nerve damage, tissue damage, stroke, and death. Yet it was being treated like a little appetizer before the “crani-entrée.”

Jim and I went into a small, somewhat dingy-looking room to get prepped with the anesthesiologist. Compared to Dr. Bederson’s office with the lustrous mahogany desk and Friday’s MRI experience in a room that could have been the set of a multimillion-dollar sci-fi film, the pre-op area seemed like a big step down. What, no catering? I thought, looking around for the tuxedoed waiter holding a silver tray full of medicine cups.

The anesthesiologist, a nice-looking blond woman in her forties, came bursting in with a huge personality, putting me at ease. “Hi, I’m Dr. Patricia Brou; you can call me Patty. I’m going to make this procedure a lot more pleasant for you by giving you some drugs to make you sleep. Sound good?” I could have been in the green room of a comedy club. Just from this brief interaction I knew she was smart, funny, and edgy. Just my type. She explained that in addition to the general anesthesia through an IV tube she would use to put me to sleep, she would control my breathing through a tube. I mentioned my five kids to her, which had become my standard guilt-trip message to all the medical people who held my life in their hands. I learned she lived in Westchester and had school-age kids of her own. I wanted to hang out with her. I realized I might never have the opportunity. Had I not really noticed humans before? Everyone suddenly seemed so kind and interesting. I wanted my kids to have a playdate with this woman’s kids while we sat on iron chairs in her Westchester garden with glasses of wine and a cheese tray. Now that I could die or become a vegetable, it might never happen. What a wasted opportunity.

The doctor who was performing the embolization entered my dingy throne room where I was holding court. She introduced herself as Dr. Fifi. Her name seemed out of place for the gravity of the moment. Her name was the star-spangled sweatpants of the tumor embolization. “Dr. Fifi” sounded like a name that my seven-year-old daughter would invent for her Sims video game as the fancy vet that treated only poodles. Unlike her name, though, Dr. Johanna Fifi was very serious. Friendly but to the point concerning what was about to happen. She explained again the procedure of the wire being threaded up my femoral artery and eventually reaching my brain tumor to seal the vessels shut. I mentioned again that I had five kids who needed me. I said good-bye to Jim, and I gave him my computer password and the code to unlock my phone. He would have to learn the teachers’ names. Actually, he would have to learn who had which teacher. He would have to learn the after-school schedule and when to call the dry cleaner. Shopping on FreshDirect was easy because they highlighted “your favorite” products on the website. I let him know. He was just nodding over and over, looking at me with watery eyes. Was he having allergies? He should take some Claritin. There was too much to explain. I was about to have surgery of the brain and I was more worried about Jim and the kids. Katie was sucking her thumb while she slept. Michael had to learn to read. Is someone going to pick up Jack’s medication? Would Marre start vaping and drop out of school? Would Patrick remember me? It was too late now to think about these things. I had to make it out of there; I had too much to do.

The doctors and nurses escorted me into the OR, where I got up on the table myself. I remember joking around with Dr. Patty while she was preparing the IV sedation. I don’t remember precisely what I was talking about but it was probably something like how when the IV sedation kicks in you just stop talking in midsen…

The next thing I knew I woke up in post-op on a mobile bed with five doctors, Jim, and Leslie standing in front of me. It was like the ending of The Wizard of Oz, but no one was smiling. The first thing I remember saying is, “What’s wrong? You all look like undertakers!”

Dr. Fifi spoke first. “We weren’t able to perform the embolization.”

“What do you mean?” So I just went under for nothing? What did they do in all that time? I didn’t know how long I’d been out, but I knew it was a long time. The team looked disheveled, like they had been caught up in the twister.

“We were going into your brain through the carotid arteries in your neck, but the imaging revealed you have damage that looks like fibromuscular dysplasia.”

“Is this caused by the tumor?”

“No, it is something that you were probably born with. We discovered it as we were charting the path of the angiogram.” I was speechless. Turns out I have this rare disease of bumpy and weak carotid arteries. The only possible way I could have found this out was if I’d had a perioperative embolization of a brain tumor, or if I’d done a killer yoga headstand and my neck snapped. It would have been literally “killer.” Thank you, brain tumor, I thought. You’re welcome, it throbbed back.

“We don’t think it is possible to embolize.” Leslie was standing there with that “I hate to be the bearer of bad news” look on her face. “But more importantly, this new discovery means that we will not be able to do the brain surgery as planned.”

“Wait, you can still remove the tumor, right?” I said in the same tone as a demanding queen hurling disdain at my groveling subjects. Everyone looked hesitant.

“There may not be a safe way to do the surgery,” Leslie replied. Anything had to be safer than waltzing around with a pear in my brain that was about to explode the next time I sneezed.

“Can you just fix my arteries? This is a hospital for God’s sake!” This was my first of many experiences with feeling annoyed by my caregivers and it surprised me. Moments ago, everyone was perfect and wonderful. Now, I felt like I was the victim of a conspiracy. Being angry with people who are trying to help you is something that contradicts all logic, yet looking back on this scene, it feels strangely familiar to me as a mother, and probably would for anyone who is a caregiver. “But I don’t want a bath, Mom! I hate you! You are so mean for making me eat vegetables and wanting me to wear sweaters and go to bed early! You are evil.”

Leslie was the voice of stern reason: “Let’s worry about fixing the arteries later. Right now, we have a new urgent issue to deal with as a result of this complication. Dr. Bederson has to figure out how to position your head during the craniotomy. Since the method we were originally going to use to operate involved twisting your neck to the side, with what we now know about your weak arteries, that position would put your life in danger.”

I wasn’t thinking clearly. Probably because I had just awoken from an IV cocktail blackout. A new issue? “Can’t you just figure something out?” I was mortified. I had come this far, prepared mentally and spiritually for this moment, and now they couldn’t do the brain surgery. It felt like I was in my bridal gown at the altar and the groom had bailed.

Dr. Fifi cleared her throat. “There is a possibility there is one healthy branch that would make it possible. We have to study it. We have to meet with the whole team and discuss options.” The whole team? How many more were there? The group that stood around my bed was more than enough for a basketball game, with Leslie starting at center. Leslie assured me, “We will figure something out. It will just be more complicated.” As if brain surgery was not complicated enough. But what Dr. Fifi and Leslie gave me was hope, and that’s all I had.

They moved me into a room and I fell asleep. I don’t remember falling asleep. I was awake, then I wasn’t. You expect to go out with anesthesia, but there was no warning this time. Maybe a pocket bubble of drugs was circulating around in my bloodstream and it suddenly popped. I remember nothing; the only reason I knew I’d fallen asleep was because I woke up. I was in a room alone and it seemed to be night. There was no window in the tiny room, but I sensed night. I felt like I had slept through a party or something. Everyone had gone home.

I found out later that an “alternate solution” had been agreed upon. I didn’t get the embolization, which meant there might be more bleeding during the surgery, potentially making it take longer, but the real victory that came out of their strategy meeting was they found a position to put my head in that was not life-threatening so I could undergo the life-threatening brain surgery for my life-threatening brain tumor. I didn’t understand it either, but apparently it was a win. I was to have the surgery in the morning, so while I was out cold, they instructed Jim to go home, as I would probably be asleep for the night. He was told to come back early the next day. Waking up totally alone and having no idea what was going on, I was annoyed that nobody told me anything. I mean, sure, I had been asleep, but at least put up a sign. Where was I? What time was it?

A nurse came in and seemed surprised I was awake. I asked her what time it was. It was almost midnight. I remembered the rule about eating before surgery. I was really beginning to feel the pain of not eating for a whole day, and now that I was quickly approaching the witching hour of “nothing to eat or drink after midnight,” I needed to make a move. I asked the nurse what I could have. She said, “Nothing to eat.” So I asked her what I could drink. She offered me water or juice, and I settled for cranberry juice. She brought it to me in a can along with a white Styrofoam cup filled with crushed ice and a straw.

I will never forget that cranberry juice as long as I live. It was pure sugar and cranberry flavoring. I kept pouring the juice into the ice and drinking the whole cup in one long, sweet straw sip, over and over. I asked for another can. It was like the best thing I’d ever tasted. I drank so much cranberry juice that I started to feel like I had eaten five cakes. I was determined to get those calories one way or another. Glad I did. It turned out to be the last thing I swallowed for four months.

TUESDAY

The Surgery

I have a very foggy memory of actually going into surgery the next morning. I don’t know if I even woke up fully. They just wheeled me in. A gurney is kind of a cool way to get to where you’re going. It’s so effortless the way they lift you out of one bed onto it, wheel you through corridors and elevators, and then lift you onto the OR bed. It’s a good idea for an app: “Uber-Gurney.” It might catch on if people don’t mind the muscle atrophy.

I’m sure Jim was there, but I don’t remember. I have this feeling that Jim was there. Standing by, feeling helpless, but meaning so much to me. I know Leslie was there; I remember her face, but I don’t remember what she said. I remember the gurney ride with the ceiling passing overhead. I remember the distorted voices of the doctors, nurses, and orderlies. I remember the blinding lights in the OR and everyone in scrubs. Was Jim in scrubs? I imagined that all my kids were there, in scrubs, just out of my eyesight, but I felt their presence, cheering me on.

One thing I do remember clear as a bell is Dr. Bederson in his surgery gown and hat, smiling at me with perfect teeth. I said: “Can I say a prayer for your hands?” Even with everything I had been through, and everything that was about to happen, I remember feeling a little embarrassed to ask him this. Like he would think I was a Jesus freak or something. Would he say “Yes” because he couldn’t say “No” but secretly wish I hadn’t asked? When I went under would they all laugh at me? “Ha-ha! Can you believe she wanted to pray over my hands? Awkward!” But I did. I needed to.

I took Dr. Bederson’s hands in mine and started to talk to God. “Dear God, bless these hands that are about to cut my skull open…” Those hands. They literally vibrated with power. They were like magic hands. He was a magician and Leslie was his beautiful MA (magician’s assistant), handing him rabbits and wands. The second I touched them, I knew he was superhuman. His hands felt like he held a million lives in them. Past, present, and future.

I remembered a fun fact I’d learned about Dr. Bederson: in his spare time he was a gifted sculptor. That made perfect sense when I touched his hands. I wonder if Michelangelo and Rodin were also superhumans. Demigods among us mere mortals. I realized that I had nothing to worry about putting my life in these hands. I didn’t even need to ask God to bless his hands after all; they felt already blessed.

It occurred to me at that moment that I was surrounded by space-age technology. There were screens and computers all over the OR. They were not magic. They were electronic. Science suddenly seemed less reliable. “I also want to bless all the electronic items in the hospital, that there is no blackout or generator failure!” I blurted. I sensed that all in the room wanted to expedite the anesthesia process so I would shut up.

“Yes.” Doctor Bederson smiled. “Pray for the electricity.”

And that’s all I remember.

FADE TO BLACK

I guess I had brain surgery. I mean, that’s what they told me, but I can’t be certain because I wasn’t exactly conscious. Again, no posted sign. When I first opened my eyes, I was propped up slightly and saw the stark lighting of the hospital and medical people walking back and forth. I couldn’t move. Or maybe I could but just didn’t try.

It took a couple of seconds for me to realize that I was awake and the surgery was over. Immediately after that, I realized that I realized.

I’m me, I remember thinking. I was me. What a simple thought. And how horrifying that if I had been brain-damaged, I never would have had that thought.

Turns out it was a different kind of tumor than they thought. It was not a meningioma, but a choroid plexus papilloma. I know, big difference, right? What I later learned was that it was much better that I had the choroid plexus because it was more “flakey” or something, and didn’t damage my nerves as much when they spent eleven hours picking it out. Hope you’re not eating a croissant while reading this. If you are, sorry. But it really was like a croissant but less buttery.

Apparently, these specific tumors are commonly found in children, whereas meningiomas are more commonly found in middle-aged women. I took it as a compliment: “You have the tumor of a much younger person.”

“Why, thank you!”