Tag Archives: Memorial Sloan Kettering

Chapter Five: Blood Moon

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Read:   Chapter One    Chapter Two    Chapter Three      Chapter Four

My first targeted chemotherapy drug, Crizotinib, arrived in a plain brown box, held out by the FedEx man as if it was just another Amazon book or Etsy bauble. Inside the box was a thick Ziploc bag with a yellow label reading “CHEMOTHERAPY DRUG. DISPOSE OF AS A BIOHAZARD,” and inside that was a chunky white pill bottle. I lifted the bag gingerly, feeling myself deflate as I looked at the biohazard sign on the label. I, who ate organic vegetables and bought paraben-free soap—I, who filtered my water and had never smoked—was now going to have to put this poison into my body.

Not that there’s ever a good time to get a Stage IV lung cancer diagnosis, but this timing was particularly bad. It was September: we were about to start renovating an apartment and moving house. Perhaps more importantly, our son N was applying to high school, which in New York City is a bit like competing on Jeopardy while also training for the Olympics.

As I turned the pill bottle over in my hands, I thought of N: my once-chubby toddler, now morphed into a stick-thin young man with body odor and chin hair. Before my cancer diagnosis, he’d been the primary cause of worry in our family. Growing up, he’d been a sweet, quirky child, with a sensory sensitivity that made certain sounds and sensations unbearable to him. Fire alarms and shoe stores terrified him; a bicycle might as well have been a torture rack. We often had no idea what would trigger his panic.

A child’s developmental delays can challenge a parent’s love. I’d had plenty of moments I wasn’t proud of, like when I forced N to go down a spiral slide on my lap, only to fall on top of him and break his toe. I’d waved away his loud protests at the top of that slide because we were with another mom and son, and I wanted N to be ‘normal’ so badly that it hurt. I should have listened to him instead of ignoring his very clear signals. Mostly, though, I loved him fiercely and protectively. The idea of leaving him and his sister motherless made me feel sick to my core.

“Well, this is exciting,” I said to my husband, D, after taking the first dose of Crizotinib that evening. “It feels as if I should blow up, or melt, or something.” For emphasis I spread my fingers wide, making an exploding sound. In fact, twenty minutes later I was crouched over the toilet, violently throwing up. My oncologist, Dr. R, had wanted me to see if I could tolerate the first dose without anti-nausea medication, and here was our answer. I had loved Dr. R when we met with him, but at that moment, I hated him a little bit.

Ondansetron, a strong anti-emetic, became my best friend after that. I took it a half-hour before each dose of Crizotinib, and it reduced the vomiting to mild queasiness. Within days, I could feel my energy lift, bringing my mood up along with it. The Crizotinib must be working! It was showing that cancer the door!

But then, during a yoga class later in the week, my heart started beating like a jungle drum during savasana, the final rest.

Over the next couple of days, palpitations came and went. When I Googled “Crizotinib heart palpitations,” I saw that an interaction between Crizotinib and Zoloft could lead to “adverse cardiac events.” Hm. I took Zoloft for depression. Why had no one warned me about this?

It was all so new, and worrying. What to do? On Sunday night, I called the on-call physician at Memorial Sloan-Kettering. “I hate to tell you to go to the Emergency Room, but I’ll sleep better knowing that you did,” he said. And so, armed with this imperative to save an unknown doctor’s sleep, I gathered up a few items—laptop, iPad, a snack—and made my way outside.

I was walking uphill on 116th Street when something stopped me: the moon wasn’t its usual self. Instead, hanging in the sky just above the Columbia campus trees was a shining white scythe cradling a glowing orange ball.

It took a moment before I realized what this was. I’d heard on the radio that morning about the blood supermoon eclipse, a phenomenon that happens only every few decades, when a supermoon (the moon at its perigee, the point closest to Earth) combines with a near-total eclipse. The eclipse sends beams from the sunset around the Earth’s shadow, bathing the moon in rusty hues.

I stood there, humbled by the moon’s ability to be transformed, by light and motion, into this apricot fireball. N had wanted to stay up to see it, and I’d told him there was no point, that the forecast was too cloudy. And sure enough, as I stood there—and before I had the presence of mind to whip out my camera—a thick bank of cloud rolled over and obscured the whole thing. It was over in a moment. But I’d seen it!

I’ve often marveled that opposing forces can occupy the same space. Beauty and ravage, hope and despair, love and grief. Now, as I was on my way to a cancer hospital, this blood moon had shown up in all its fiery splendor. I felt giddy, and guilty that N had missed it.

Unlike the thoracic clinic at Memorial Sloan Kettering, which is surprisingly jaunty, the Urgent Care was as soul-deadening as any other E.R. Lights flickered; the staff seemed zombie-like. An aloof nurse stuck EKG pads all over my torso, and as she drew my blood and fitted an IV, I tried to imagine I was somewhere—anywhere—else.

After she left, I texted D. IV just fitted. Prob here a while.

Ouch, he texted back. High school interview tomorrow morning, remember?

Shit, I’d completely forgotten. Reschedule? I typed.

Prob too hard. Grin and bear it? Plus, N psyched.

I sighed, finger hovering over my phone. Ok.

Forty minutes later, I was weeping into a bleached white sheet. I couldn’t help it: I was just so miserable and lonely. It was so unfair that I had to sit there, under the beeping machinery, while my friends were all tucked up in their beds. To cap it all, in a few hours I’d have to pull myself together and sit through a fucking high school interview.

As I cried, nurses passed back and forth in front of the drawn curtain, and the man in the neighboring bay sighed. I couldn’t stop. It was only the third time I’d cried since getting my diagnosis, and as the tears rolled down, I thought it was probably good that I was letting out my feelings. But after ten minutes, I only felt more dismal.

Dr. K arrived while I was still oozing tears. He was in his forties and sharp-featured, with sleek, well-coiffed hair. My EKG was normal, he said. After a moment, gently but with an edge, he asked, “If you don’t mind—the tearfulness, what’s that about?” If I’d had more presence of mind, perhaps I would have said, “I got a Stage IV cancer diagnosis five weeks ago—how would you be feeling, asshole?” As it was, I burbled something about having been healthy all my life until now. As I spoke, I could almost see his notes—“patient very emotional.” But his face remained impassive as he told me they’d keep me overnight to monitor my heart.

How do you monitor an aching heart? When N was a young child, we’d spent countless hours with doctors and therapists, blindly trusting anyone who claimed expertise. We’d invested in treatments ranging from Omega-3 capsules to compression vests, and we’d hoped and despaired. Then in middle school, without warning, our son suddenly blossomed into a confident, capable young man. There were still quirks, for sure: he couldn’t tie laces, and only ate spinach if he could have milk to wash it down. But for the most part, he was ‘normal.’

Dr. K arrived in the morning with good news: not a single palpitation all night. That ruled out the possibility of a drug interaction. The arrhythmia had likely been caused by stress, he said, or by the Prednisone I’d been given to deal with inflammation. I was free to go.

Out on the street, the light was bright and hard, but the city looked wonderful. Everything gleamed: even pigeons and hot dog stands seemed to have been spiffed up, as if for a movie shoot. Illusory as it might be, it was thrilling to have the sense of being a regular citizen again, walking down the street with no tubes attached to me.

A couple of hours later, D and N and I were running up and down stairs of an elite private school, following an eleventh grader named Heather. Bright and peppy, Heather bounded up and down with the eagerness of a Yorkshire terrier while I dragged behind, trying to smile because I was sure she would be reporting back on us.

Finally, we sat in the office of the Admissions Director, putting on our best faces as she tried to sell us on the idea that the school was diverse and modest (which I doubted, given that one of Donald Trump’s sons had gone there). She talked for a really long time, and I struggled to hide my fatigue. With the make-up I’d plastered on, I felt like a drag-queen version of myself.

Truth was, it was a beautiful school. No doubt, kids who went there would be on a fast track to becoming Masters of the Universe. But our application was more or less an exercise in futility, since—absent a humungous scholarship—we couldn’t afford to send our son there. He was not among the privileged wealthy, just as I was no longer among the privileged healthy.

N was a trouper. He had dressed in his only blazer, which I saw now was getting too short in the sleeves. He’d taken in the tour of the school with bright eyes, and I loved his open and positive spirit.

I wished he’d been with me the previous night on 116th Street. You didn’t need to be rich, healthy or even human to see the blood supermoon—she was nothing if not democratic. She shone alike on Wall Street bankers and Himalayan yaks, on cancer patients and hot dog vendors, painted bronze like Athena going to war. She was tethered to this crazy planet and yet detached from it, untainted, a reminder that wonder could still exist.

Chapter Four: Looking for Dr. Right

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Read:   Chapter One    Chapter Two    Chapter Three

Many years ago, when I was in my Masters of Fine Art fiction program, a fellow student wrote a story in which a twenty-something woman was involved with an older man, an oncologist. For effect, he was referred to only as “the oncologist,” and every time I read that, a frisson ran down my spine. It seemed like shorthand for “a sensitive person who has taken on a huge burden and must be suffering greatly.” In the story, “the oncologist” grew plants on his rooftop garden in Chinatown. Of course he did. He needed to see life beginning, too.

My first oncologist, who I named Dr. Pop Tarts for his insistence that nutrition had no bearing on cancer, did not fit the profile of the sensitive, nurturing doctor. Luckily, I’d been able to get an appointment with another doctor, this one at Memorial Sloan Kettering, New York’s leading cancer hospital. Still, after my experience with Pop Tarts, my expectations for Dr. R were low. Maybe all oncologists were assholes, I thought. Perhaps the “God complex” that afflicts many doctors is magnified in them, from helping certain patients cheat death for a while. Or maybe they’re all just overworked and tapped out on empathy.

The experience with Pop Tarts had been notable for other reasons, including the dismal, hangar-like aura of the hospital’s waiting room and the two-hour wait we’d endured before seeing the doctor. So it was a relief to find a vastly different vibe when hubby D and I arrived at the Thoracic Oncology floor at Sloan Kettering. A smiling receptionist greeted us, and the waiting room was filled with light, populated with comfy sofas and plants (artificial, but still), as if someone had actually put thought into what might make a cancer patient’s ordeal bearable. Overall, the place felt calm, devoid of the seething frustration that permeates many doctors’ waiting rooms. The positive impression continued when my name was called—less than twenty minutes after arrival!—and we were escorted by a cheerful young man into a consulting room.

As we entered the room, I could immediately see that thought had been put into its design. Large and bright, it had an ensuite bathroom and a triangular doctor’s desk discreetly tucked into one corner. It was nothing at all like the cramped, grimy room where Dr. Pop Tarts had failed to win my trust.

Maybe these things weren’t important, but they felt somehow significant, in the same way that the personal touches in the waiting room had. Sometimes, a small design tweak can make a big difference—like the time eight years before when, as part of an apartment remodel, we’d changed the angle of a doorway just enough to prevent the bathroom door from banging into the toilet every time you opened it. A small thing, yet not insignificant: for months afterward, I’d smiled at the lack of a clang when I opened that door.

D and I sat down, and I huddled against him, cold: I’d been getting mild fevers lately. Earlier, in the Japanese restaurant where we’d eaten lunch, I’d become weepy for only the second time since my diagnosis. I’d confided my worry that my cancer would pull us apart: that he would be left helplessly treading water while I, floundering in its swells, would grow jealous of his stability. I was also worried about the kids, for obvious reasons—particularly Thing 2, whom we’d adopted as a newborn. “She can’t lose another mother,” was a refrain that often ran through my mind.

D put his arm around me and leaned his head against mine, and we sat like that for a while, quiet. In the past few weeks we’d experienced confusion, anger, disbelief, exhaustion and fear. There wasn’t much left to say, except what I’d said when I’d fainted after my liver biopsy, then regained consciousness and remembered where I was, and why. “Nothing about this is okay,” I’d whispered then to D.

Maybe this new doctor would open the door to the dark room our life had become, let in some air, dispel the fear. But that was a lot to put on one individual.

He was, however, opening the door and stepping into the room. Broad face under a thatch of dark grey hair, a slightly lumpy nose, soft eyes with droop-down corners. A gentleness about him, sort of what you’d get if you crossed Mr. Rogers with a friendly sea otter. He reached forward and shook our hands, smiling in a way that was reassuring without being too upbeat or fake. Behind him came a small Chinese woman who he introduced as his resident trainee.

“So,” he began after he’d settled himself into a chair, “I read your history, and if I can summarize, you had some symptoms, then a few misdiagnoses before you got to the point of having a CT scan. And then,” he leaned forward, “the results came back, and it was as if you’d woken up into the worst nightmare you could imagine.”

“That’s right,” I said, and something seemed to lift in my chest. To have my experience recognized and validated in that way felt like a gift—but gifts can be overwhelming too. Suddenly, the dam I’d carefully erected to hold back my feelings broke, tears gathering in the corners of my eyes, then bubbling over and rolling down my face. “I’m sorry,” I managed to say eventually, “I’m a bit weepy today.”

Dr. R plucked a tissue from a box on the desk and handed it to me. After a moment, he reached forward and patted my arm. “It’s all right,” he said. “This certainly isn’t the first time someone’s cried in this room, and it won’t be the last.”

I looked at him, blotting my tears with the tissue. His calm reaction, and the willingness to offer physical comfort, spoke volumes. He must have encountered situations like mine hundreds of times, yet he was fully present, sympathetic. Design tweaks: Dr. Pop Tarts hadn’t even known whether D or I was the patient. He’d buried himself in the computer and scorned my stance on nutrition. He’d left me feeling as if the bathroom door wasn’t just banging against the toilet, but cracking its porcelain bowl.

Dr. R was talking about treatment options. My genetic testing had revealed that I had a specific mutation, ALK+, for which there were new targeted therapies: I would go on the one approved as the first line medicine, Crizotinib.

“It can cause nausea; we’ll prescribe something for that,” he said. “But why don’t you try it without, first,” he gave an encouraging smile, “to see if you can tolerate it that way?”

“All right,” I sniffed and smiled unsteadily back at him. Behind us, his resident trainee scribbled a note onto a legal pad. I felt a sense of kinship in the room, a murmur of possibility. Together we could beat back the evil colonizers marching through my organs. For the first time since my diagnosis, I sensed the potential to breathe normally again, to relax.

There was one loose end to sort out. I mentioned that Dr. Pop Tarts had also put in an order for medicine for me, which might confuse the insurance and the specialist pharmacy. This struck me as a bureaucratic nightmare—but, unperturbed, Dr. R told us his nurse would deal with it. I’d already spoken to her by phone, and he apologized that she was out for the day. “She said she’s really looking forward to meeting you,” he added.

Afterward, D and I stood in the waiting room, slightly dazed, as if we’d just come from an audience with the Dalai Lama. “What did you think of him?” D asked.

“I loved him,” I said sincerely.

My husband, who I sometimes chide for his skepticism, looked back at me with a slightly goofy, star-struck expression. “I did too,” he said.

We smiled at each other then, and the door opened a crack, letting in a small, warm beam of light.

We had found Dr. Right.

Chapter Three: Dr. Pop Tarts

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It was the morning of my first oncologist appointment, and my nerves were on edge. Perhaps, unwittingly, I was squeezing the glass instead of just holding it, or perhaps it was just bad luck. Either way, as I filled it with water from our Brita tank in the fridge, the damn thing broke in my hand, sending water and glass shards raining down over the floor, and ratcheting up my nervous tension another few notches. That particular glass had had a vertical crack in it for some time, but we hadn’t thrown it out, purely from inertia. Really, glass, now? was my first thought—and then a pushy writer’s impulse took over. What a great freaking metaphor!

Was it too obvious? Too facile? Like the glass’s crack, my cancer had been hiding in plain sight—until it busted out and flooded my life. Hm, I could work with that! Before I knew it, I was spinning off into Writerworld, imagining a personal essay that opened (lyrically and beautifully, of course) with the glass breaking. I was all over it, getting carried away. Perhaps my just-revised novel would be bought and I could time the essay to coincide with its release. I could see it in The New Yorker, or perhaps the New York Times…

Whoa, girl, I told myself, get a grip. Right now we don’t even know if I’ll be alive to see my novel get to market. We know precious little. That’s why we’re seeing the oncologist.

“I’ve found someone good for you,” my internist had said over the phone on Monday. “Dr. S is very smart, but also very compassionate.”

“Great,” I said.

“Yes, I think it’s a good match. He emailed me back to say he’d read your reports and was looking forward to meeting you.”

I smiled faintly; that did actually sound encouraging.

An hour after the broken glass mishap, hubby D and I sat in a waiting room the size of two tennis courts put end to end, with a high glass ceiling that made it seem monolithic and impersonal. Around us were people in wheelchairs with IV drips, and others with white, waxy skin and faraway eyes. They all seemed resigned to the tedium, and it made me despair to think that this was my future. Every so often, a nurse would emerge from a door in the corner and bark out a name, and someone would get up and shuffle off behind her.

Not us, though. An hour ticked away, then two. At last, we were called in—only to sit unaccompanied for another twenty minutes. Tiny to begin with, our consultation room was half-filled by a huge table with a large computer monitor on top, so that it felt like an overcrowded dollhouse. A window beyond showed a tantalizing square of bluish-grey sky.

By this time, I was angry: was our time worth nothing? If the compassionate oncologist was so damn compassionate, wouldn’t he make an effort to see a new patient more promptly?

So when he blew into the room a few minutes later, looking overwhelmed and harried—then glanced at us and said, “Which one of you is the patient?”—I almost burst a blood vessel. This was the guy who’d “read your reports and was looking forward to meeting you”?

“I am,” I said tightly.

He had white hair and a white beard—but was younger than those would imply, maybe mid-forties. His head was big, his features open and broad. With some difficulty, he slid behind the desk and wedged himself into the chair, then buried his big head in the computer monitor and began typing. A few minutes later, without looking up, he said, “You’ll have to excuse me. As you know, health care these days isn’t about the patient—it’s about the computer.”

I blinked. There was an awkward silence, then I said, “Well, hopefully it’s still about the patient too.”

He glanced up, his face half-hidden by the computer. “Oh yes—I mean, for me it is. But there’s so much data, and I’m not really a computer guy…”

“Dr. P said you’d seen my records already?”

“Let me just find them. I’m bringing them up now… oh, shoot. It’s not letting me in to the system. Just a moment…sorry…”

It got worse after that.

When he finally got around to taking some history from me, I asked him he’d heard of David Servan-Schreiber’s book Anticancer. I’d been reading it that week and found it very inspiring. Servan-Schreiber was a brilliant neuroscientist who, at thirty, discovered he had an aggressive brain tumor when he put himself into one of his own fMRI machines. Desperate to know what he could do for himself as a patient, he then researched all the ways he could enhance the “terrain” of his body to make it less hospitable to cancer. He lived another twenty years.

“Hm,” the oncologist said after I’d gotten to the end of my somewhat breathy pitch. “Well, you’ll have to excuse me. I’m a bit of a skeptic.” He went on to say that there were boatloads of cancer “quacks” out there profiting from people’s desperation. (Sorry, did I not mention that Servan-Schreiber was a neuroscience professor who did meta-analyses of published studies?)

“But surely…” I stammered, “surely you must think it’s better for me, at this point, to be eating organic vegetables and drinking filtered water than chowing down on cinnamon rolls?”

He looked up and shrugged. “Not really. I eat lots of Pop Tarts and I don’t have cancer.”

I must have blinked ten times, while inside me, hope and respect spiraled away like the smoke from an extinguished candle. This relationship is doomed, I thought. Get me out. He was looking at me earnestly, but I thought I could detect a tiny hint of a smile playing around his lips, as if to say, Don’t worry, I’ll set you straight about these silly cancer books…

Unable to hold his gaze, I dropped my eyes to where my hands were knitted in my lap. At this point in my life, I’ve been around the block enough to know that Western medical training includes next-to-no information about nutrition, supplements and mind-body work. Still, it never fails to amaze me when doctors proclaim that such things have ABSOLUTELY NO role to play in health care. Their certainty often seems aggressive, as though you’ve attacked the core of their integrity rather than suggesting a compatible, complementary approach. Years ago, when I was using diet to help treat uterine fibroids (a strategy that worked), an endocrinologist had told me to “stop torturing yourself with these rigid rules and go enjoy a steak and glass of wine.”

Finally, I found my voice. “We have an appointment at Memorial Sloan Kettering in two weeks,” I blurted out.

“Oh?” Pop Tarts raised an eyebrow. “Who are you seeing there?”

I mentioned a name; he looked impressed.

“Well, he’s more famous than me!”

He then went into a little speech about Memorial, the essence of which was that, while the world-famous cancer hospital was sparkly and had all the latest gizmos, it didn’t always deliver on its promise. “We have gizmos too,” he said, his face turning sad. “We have a precision medicine department.”

“It’s not just that,” I said. “Obviously the doctor is key, but it’s also about the whole experience—things like the waiting room…”

He cocked his head toward the room in question. “You didn’t like the zoo? That’s what we call it, ha ha. I know it can be grim. But once you start coming here you get used to it, and then you’ll start to make friends there, and you’ll barely notice the time go by.” Seeing me look doubtful, he continued, “You had a long wait today–I’m sorry about that. I lost an assistant recently, and things have been crazy–I’ve been doing admin on top of everything else. I’m getting a new assistant at the end of September. Again, I’m sorry.”

I sensed an opening here, some room for truth. “We’ll forgive you if you can give us some hope,” I said, trying for a light tone but hearing my voice wobble.

He looked across the desk, eyes crinkling, seeming to see us as real people for the first time. “Oh yes,” he said, speaking slowly for emphasis. “I expect you to do very well, for a very long time.”

Well, so there was that. But even as I brightened at the words, I couldn’t dismiss his overall demeanor. The uplift was an afterthought, something he wouldn’t have even thought to say if I hadn’t asked.

We stood up, he loomed over the huge desk and we shook hands. I couldn’t alienate him, because his hospital was still doing genetic testing on my liver biopsy, and because I needed him to get me onto medication as soon as possible. But I’m sure my body language was broadcasting it all over the place.

Sorry, Dr. Pop Tarts, but you failed this interview. I’m not going to be one of the animals in your zoo.

Read Chapter Four: Looking for Dr. Right