Tag Archives: cancer

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.

My favorite new drink: Metabolistic Lemon ‘Milk’

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lemonmilkI’ve always known that lemon juice was a good liver cleanser, and for a while I was in the habit of drinking lemon juice-spiked water first thing in the morning. But then it got a bit boring, and I fell out of the routine. Until now! I recently discovered a way of making lemon water delicious, fun and extra healthy. It does take a bit of effort (you have to be prepared to use and wash a blender), but isn’t that true of most worthwhile things?

This recipe comes courtesy of Dr. Brenda Walding of The Paleo Secret, and I love it. It involves using whole lemons—pith, zest and all—which I was a bit worried about until I read this page and this page. To summarize: the essential oil in lemon zest is great for your skin, and the bioflavonoids in the pith are good for “elasticity of blood vessels and capillaries, but also for fighting allergies, inflammations and even cancer.” To which I can only say, Go pith! (Couldn’t resist that. When I was growing up in the U.K., there were a million Monty Python-esque jokes about ‘taking the pith.’)

pythonpith

I’ve dubbed this Metabolistic Lemon ‘Milk’ because (as you’ll see from the picture at the top), it comes out looking like buttermilk, and because Dr. Walding touts it as a metabolism-booster. Actually, when I Googled ‘lemon’ and ‘metabolism,’ there was no consensus on whether lemon boosts metabolism, but water does, and lemon is cleansing and PH-balancing, so you can’t really lose here.

Ok, enough talk—here’s the recipe.

Metabolistic Lemon ‘Milk’

½ lemon (since you’re using the whole fruit, organic is desirable)

2 cups filtered water

1 tablespoon good quality extra virgin olive oil

Sweetener to taste (I use monkfruit sugar, but agave, maple syrup or honey all work)

Optional: a small chunk of fresh ginger

Wash the lemon and cut it into bite-size pieces. Put these in the blender along with the other ingredients, and blend on high power until everything is pulverized. Strain through a fine mesh sieve, admire your handiwork and drink! (If you’re the kind of person who likes ‘extra pulp’ orange juice, you can also drink it without straining it.)

The taste is surprisingly mild, not aggressively lemony. I can imagine varying up this recipe by adding in other ingredients, like fresh parsley or a few drops of vanilla. But for now I’m happy with this set of ingredients—and you know what they say. If it ain’t broke, don’t fix it.

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 Two: Let’s All Do the Vasovagal Syncope

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Read Chapter One

The first time I ever fainted, I was having a mammogram. The test was routine—I’d reached that stage of life where an annual scan was indicated—but I’d never had one before. Though I vaguely knew what was about to happen, the reality exceeded my worst expectations. The radiology office was crowded and impersonal, and I waited for over an hour before finally being shown into a big, messy scanning room where an indifferent technician prodded and paddled me like a piece of meat. I narrowly survived the flattening of my right breast, but when it came to the left, the metal plates squeezed me uncomfortably, and—although I knew it was physically impossible—I felt as if my heart was about to be crushed. The last thing I remember is the plates starting to slide apart, and then I was staring up at a Styrofoam-tiled ceiling, with an alarmed woman hovering over me shouting, “Oh my gawd! Oh my gawd!”

Once I’d recovered, the whole episode seemed amusing: I dined out on the anecdote, gleefully imitating the technician’s nasal cry and my understated British reaction to it (I’d refused juice and walked myself home). Want to know how to prepare for a mammogram? I asked younger friends. Nothing to it. Just lie on a garage floor with your breast wedged under a car tire, then ask a friend to back up the car. Ba da boom!

Then I got cancer and became a frequent fainter. Suddenly it wasn’t so funny any more.

The day I had my liver biopsy, I was still fully immersed in magical thinking about my cancer. It had been two days since a doctor I didn’t know had called to tell me that my liver was riddled with tumors, and less than a day since a second CT scan had caught a primary tumor on my lung. I suppose I was in shock, and denial: this wasn’t happening, because I felt fine and because cancer happened to other people, right? The biopsy would surely reveal that things weren’t as bad as they seemed, or that I’d been sent someone else’s results by mistake.

It was a Friday, lunchtime—and because I’d been squeezed in to radiology at short notice, no one could tell me exactly when my biopsy would happen. Sitting in the waiting room, hubby D and I were nonchalant. We’d brought our laptops to the hospital, and as a television blasted inane banter over our heads, we waited, immersing ourselves in work. No one had told us what to expect from the procedure, and I imagined it would be like the endometrial biopsy I’d had years previously, which had been performed in a couple of minutes by my OB-GYN.

But slowly, as we watched patients shuffle to and fro in gowns, it became clear that this was more serious. Eventually, in a windowless room with a row of beds separated by curtains, I was prepped by a brisk nurse who fitted me with an IV port. A man came in and introduced himself as Brian, the interventional radiologist who would perform the procedure. Brian was short and compact, with a soft voice and blue eyes that looked as if they’d witnessed some stuff. Hearing our British accents, he volunteered that he’d visited London when he was in the military. When it emerged that I’d gotten my diagnosis the previous day, he looked stricken and said, quietly, “Oh, so this is very new.” We nodded, and his face took on an even more soulful look.

In adult humans, the liver weighs about three pounds. As vital organs go, it’s a heavy lifter: among other things, it’s responsible for filtering blood from the digestive tract, detoxifying chemicals, metabolizing drugs and making proteins. The Greek word for liver (hepar) is derived from a verb meaning to mend, or repair. When early 20th century philosopher William James quipped that life “depends on the liver,” he wasn’t exaggerating.

Now, thanks to the nasty bundle of cells in my lung, my liver was under attack, its vital functions compromised. “The lung and liver like to talk to each other,” a reiki therapist would tell me months later, and I would wish that, in this case, they could have shut up.

After another long wait, I was escorted down the hallway to a room with a giant CT scanner, and helped to lie down on the scanning bed. My third CT scan in as many days: the procedure was coming to seem almost normal. Brian had explained that I’d be put under conscious sedation: “You may go to sleep or not, but either way you’ll be relaxed.” A nurse offered a warm blanket and chatted about my accent; the radiologist gave me a wide smile. “I just want to thank you all for being so nice,” I remember saying, then I was drifting off on a cloud of chemical bliss.

After that, I floated in and out, vaguely aware of a fabric screen inserted over my abdomen and of Brian on the other side, squinting through an eyepiece. At one point I tried making conversation, as if we’d been thrown together at a cocktail party. “Where did you stay in London?” I asked, and his face tensed. “Just let me do my job, all right?” “Ha ha,” I thought, “I should leave him alone.” I was certainly a little bit loopy.

Next thing, I was opening my eyes and staring at a clock high on a wall. Where the hell was I? It took a second before it came flooding back: liver biopsy, hospital, cancer, no return. This realization was coupled with such a sharp, crippling sense of despair that I almost wanted to regain unconsciousness. Luckily D was there, Starbucks cup in hand, looking so happy to see me that I rallied. “You’ve been out for two whole hours,” he said. I felt shaky, but glad to be over the hurdle. It was six o’clock: we’d extended the stay of a babysitter who was supposed to leave at four. All I wanted was to go home, but I needed to be monitored for another hour.

An hour later, hooked up to a drip, I walked around the recovery room with a nurse asking me questions. Apparently I passed the test, because he took me back to my bed, unhooked the IV and told me I could dress. Relief washed through me, but before I could enjoy it, I felt a sudden, overwhelming wave of nausea: it seemed to penetrate every nook of my body. I had just enough time to say, “Wow, I feel kind of…” before I blacked out.

For all of our individual high points—travel, marriage, the birth of a child—there are corresponding low points. Into each life some rain must fall, etc. etc. I’ve been privileged to have a life largely devoid of such lows: born in a Western country, to a middle-class family, without physical or mental handicaps. Married to an intelligent and empathetic man, with kids—Thing 1 and Thing 2—who are healthy and smart, and who occasionally deign to look up from their screens.

But now, I opened my eyes and again, nothing made sense. There were three alarmed-looking people hovering over me: beyond them, a fluorescent light, a clock high on a wall. Where was I? I glanced down and saw a hospital gown, a dirty floor. I felt humiliated, like a hobo with a police flashlight aimed at my eyes.

And then it came back again: Cancer. Metastasis. Hospital. The last forty-eight hours flashed through my mind in snippets, like a montage in a very depressing documentary. Phone calls, CT scans, crying jags. Wretchedness soaked my bones: I’d embarked on the S.S. Cancer and it was steaming toward the horizon. All I could do was wave and shout, and hope my loved ones would hear me above the engine’s roar.

Because I’d knocked my head on the floor when I fell, I was tested neurologically to see if I’d had a seizure. When I demonstrated good coordination and could name the president (hey, I could have done the Supreme Court justices too!) it was decided I could be discharged. Elated, I was dressing when I suddenly felt another wave of nausea come on. This time, I got through two whole sentences: “I feel nauseous again. I’m going to lie back.” I woke to D’s voice saying, “You fainted again.” Two strikes: I was out. They admitted me to the hospital overnight.

There’s a name for this kind of fainting: it’s called a vasovagal syncope. Basically, something stressful triggers the nervous system, and it glitches. Veins in the legs widen, and blood pools there, causing blood pressure to drop precipitously. The body then faints so that blood can start flowing to the brain again.

My trigger, obviously, is medical procedures—especially if they turn out to be more involved or unpleasant than anticipated. On the day of the liver biopsy, background stress was a factor: the previous, life-changing forty-eight hours suddenly caught up with me. Up until then I’d been powering through, running on a heady cocktail of bravado and denial. My mind wasn’t fully in the game yet, and maybe my body needed to give it a wake-up call.

That night in the hospital might actually go down as the worst night of my life. Once they found a room for me, I was fitted with pneumatic socks that inflated every minute or so, making any attempt at sleep impossible. D left, so he could be home in the morning to talk to the kids and answer their questions. The night nurse, Brianna, was a Midwesterner who, every time she checked my vitals, said, “I just have to scan your super-cool bracelet” in a sing-song voice that made me want to strangle her.

Most distressingly, I had a roommate who was suffering terribly. The curtain between us was drawn, so I couldn’t see her, but I could sure hear her. She was moaning, and vomiting every fifteen minutes or so. She’d had a myomectomy to remove a large uterine fibroid, and clearly hadn’t tolerated it well. I felt awful for her, and awful for myself—so much so that at around 4 a.m. I called out (as much from desperation as compassion), “Hey neighbor, I can’t sleep and I hear you can’t either. If you want to chat, I’m available.” There was a brief silence before a whispery answer came. “Thank you. I don’t feel well enough. Maybe in the morning.”

Misery, in this case, did not love company. The next five hours felt like as many days in a Chinese prison.

Having never stayed overnight in hospital before, I wasn’t aware of the tedious process of being discharged. It took until almost noon the next day, before which I was visited by a neurologist (with four medical students in tow), an X-ray technician, an administrator, and a resident doctor who looked about eighteen. “I’ve barely ever been sick in my life, and now I have Stage IV cancer,” I told him. His face paled as he acknowledged, stammeringly, that this must be hard.

Finally—though not before I’d considered ripping it out myself—the day nurse removed the IV and told D and me that we could go. One slow, bumpy taxi ride later, we arrived back at our apartment, filled with dirty laundry and uncleaned-up toys and restless kids.

I’d never been so glad to be home in my life.

Read Chapter Three: Dr. Pop Tarts

Green Tea – Overhyped?

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One of the first books I read after getting my cancer diagnosis was David Servan-Schreiber’s Anticancer, which provided me with some ammunition to bring to the cancer fight. Servan-Schreiber, who died in 2011, was a French neuroscientist who was diagnosed with aggressive brain cancer at age thirty. Wanting to get some control over his fate beyond the medical realm, he did extensive research on complementary therapies and incorporated them into his routine, managing to live another twenty years. His book is a touchstone for countless cancer patients who would like to defy the statistics that come with their diagnosis.

green_tea_picServan-Schreiber strongly recommends green tea as a natural cancer-fighting force, and as a result I’ve been drinking it ever since. Initially I didn’t much like the taste, but now it has the familiarity of a good old friend, and hardly a day goes by without me drinking a cup or two or three—in fact, I’m drinking one as I type this.

So what’s behind the hype? Is there a sound scientific basis for incorporating green tea into a cancer-fighting regimen?

The frustrating answer, as with so many nutritional protocols, is… “Maybe.”

As Servan-Schreiber writes, green tea contains polyphenols called catechins, one of which, epigallocatechin gallate or EGCG, has properties that could affect cancer growth and spread. When there’s enough of it in the body, EGCG settles on the surface of cells and blocks the signals allowing foreign cells (such as cancer cells) to penetrate neighboring tissue. It can also prevent angiogenesis, the creation of new blood vessels that cancer cells need in order to spread.

Servan-Schreiber cites public health studies from Japan, where green tea consumption is high, to bolster his case. In one study, for example, Japanese women who consumed three cups of green tea a day had 57 percent fewer breast cancer relapses than those who only drank one cup a day.

Sounds pretty good, right? So what’s the issue?

Well, to begin with, as this 2006 paper in Life Sciences indicates, EGCG has a “low oral bioavailability”—in other words, not much of it enters the blood stream.

Second, there are concerns about possible liver damage as a result of taking too much EGCG—though these have centered on green tea extract supplements rather than the drink. The European Food Safety Authority (EFSA) recently announced that it will look into the safety of green tea catechins.

Third, of course, epidemiologic (public health) studies are generally dismissed by scientists because they are not controlled for variables. In the Japanese green tea studies, for example, things like the subjects’ general health, their ways of preparing tea and the concomitant use of alcohol and tobacco were likely not taken into account.

However, there have been a few interesting clinical (double-blind medical) studies. On this fact sheet prepared by the National Cancer Institute, some of the findings of these studies are summarized. A couple of trials found no differences between green tea and placebo, but others did. For example, there was a “statistically significant” 31 percent decrease in urinary levels of 8-OHdG (a biomarker for lung cancer) among male smokers who drank 4 daily cups of green tea.

greenteahealthA quick survey of medical sites shows that they’re not too impressed by the overall evidence. “There is no real evidence that green tea can help with cancer,” says Cancer Research U.K., which goes on to write, “the research so far is conflicting.” Memorial Sloan Kettering’s Integrative Medicine site says that green tea’s cancer preventive effects in humans “is not conclusive,” and that “human studies are needed.” (For the record, that’s different language from the site’s boilerplate dismissal of other so-called nutraceuticals, which reads, “there is no evidence to support its use for cancer treatment.”)

So the jury is out. But as a friend once said to me, “Doctors are so wary of giving false hope that they often give false hopelessness.” In other words, while green tea may not be the anti-cancer bomb that some people claim, I think it’s worth incorporating into an anti-cancer regime. Even if it doesn’t help directly with cancer, it has other health benefits that could strengthen the body to fight cancer (click on the sidebar to read about them). Up to 5 cups a day can’t harm you, and they may help. What have we cancer patients got to lose?

My favorite green tea recipe: Almond milk matcha latte

For a while after getting my cancer diagnosis, I cut out coffee altogether. Now I drink it occasionally, though not consuming dairy makes it less of a treat because I haven’t found a non-dairy milk that pairs well with it. So I was excited when I discovered that matcha latte makes a great substitute for a cappuccino.

matcha_latte

It may take some practice to make it look as pretty as this!

For the uninitiated, matcha is a finely-ground powder made from green tea leaves. It is the kind of tea used in the traditional Japanese tea ceremony. It is specially grown, including being covered for 20 days to boost its chlorophyll levels (hence the bright green color). According to the site matchasource.com (which also sells rather expensive matcha), one cup of matcha tea is nutritionally equivalent to ten cups of brewed green tea.

Such is the popularity of matcha that it is now making its way onto the menus of many cafés—the coffee bars in many branches of Wholefoods make a great matcha latte. If you want to make one at home, you’ll need a kit that includes a strainer and a bamboo whisk.

To make mine, I put about half a teaspoon of matcha powder through a strainer. I use a Japanese matcha bowl that the hubby bought me as a present, but any bowl will do—the important thing is to have enough room to whisk it up. Once the powder is sifted, I pour in a few tablespoons of hot water and mix it into a paste. Then I add more hot water. Next comes the milk, which could be any non-dairy milk (soy, almond, hemp all work well). For best results, you can use a milk frother to get it really frothy, but the bamboo whisk will do an acceptable job too.

Add your own sweetener to taste.

Chapter One: It Begins

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It should have been a wonderful summer. We were trading in humid, smelly New York City for sublime Berkeley, California. My hubby, D, was commuting down to his job in Mountain View, the kids had various summer camps lined up, and I was revising the second half of my novel. We’d rented a beautiful Arts and Crafts house in Berkeley’s Gourmet Ghetto: the house had a big deck and yard, a park opposite, and great restaurants just five minutes’ walk away. Once a week, more or less on our doorstep, there was a farmers’ market where you could buy low-glycemic potatoes and heirloom tomatoes from a red-headed transvestite named Pam.

But almost from the moment we got there, something didn’t feel right. I was more tired than usual, and often felt hot and nauseous in the evenings. I would beg off from family activities and go to bed early, not even wanting to watch television or read. During the day, I’d sit on the sofa in the spare bedroom with my laptop, holding myself very still, trying to focus on the words on the screen. After camp ended in the afternoons, entertaining the kids —especially Thing 2, who wanted to go to playgrounds and pools—wore on my body and spirits.

At first, I put it down to exhaustion: it had been tiring getting our New York apartment ready for subtenants and traveling across country. I’d also recently been through a round of publishers’ rejections on my novel, which had been emotionally draining. Perhaps, combined, these were causing my malaise? Maybe if I gave it a few weeks, the symptoms would go away and I’d be back to feeling myself?

So I let things slide for a while—hoping the situation would right itself—then reluctantly started seeking medical aid. The first doctor ascribed my symptoms to the uterine fibroids that I’d been diagnosed with about six years previously. When D pointed out that I’d had them for years without problems, the doctor speculated that perimenopause might be making them shrink and causing these symptoms. It didn’t make much sense to us, but it was a diagnosis from a medical professional, so we went with it for a while.

The second doctor suspected thyroid issues or mono. And indeed, the blood test she ordered came back showing that my thyroid level was low, despite the drug I was already taking for hypothyroidism. She adjusted my dose and I went away happy, thinking we’d found the culprit. I just had to wait for the new dose to kick in.

A few weeks later, I was sitting in my customary writing spot when something truly bizarre happened. It was as if a series of tiny fireworks erupted on the right side of my abdomen, or dozens of flower buds popped open at once. The sensation was freakish: I’d never felt anything like it before, and haven’t since. It was over in a few seconds—so quickly that I wondered if I might have imagined it—but it left its mark, a sticky residue of unease.

Still, I tried to dismiss it. I was holding myself to a strict deadline with my novel, and needed to produce pages—I didn’t want anything to be wrong. And while these ailments were concerning, they generally weren’t serious enough to curtail our activities. On weekends, we explored the stunning California coast: we made trips to Big Sur and Point Reyes, where we hiked among tule elk and kayaked in clear blue waters. We attended the 2015 Gay Pride Parade in San Francisco, cheering and waving from the sidelines as the LGBT community celebrated the Supreme Court’s historic decision to legalize gay marriage. We played tennis, went swimming and saw movies and theater in the park.

I didn’t get myself back to the doctor until the week before we were due to fly home to New York. This time I saw someone different, and she didn’t mess around. “This has been going on too long. You need an abdominal CT scan,” she said. Her best guess was that it was something gastrointestinal. She offered to try to fast-track me for a CT scan in the six days before we left California, but I said no: I’d do it when we got back to New York.

This time, I didn’t mess around either. We arrived back on Saturday, and on Monday I got an appointment with the first available doctor at my practice, who happened to be an OB-GYN I didn’t know. She scheduled me for the abdominal CT scan that Wednesday. It was a busy week: my brother and his three sons were visiting from the U.K., D was heading to London for a conference, and it was still the summer, so the kids were on my hands 24/7.

I feel as if all cancer patients should be able to remember, in high-definition detail, the moment of hearing their news. It’s our personal 9/11 or Kennedy assassination, our dividing line between normal and not. Yet my memory of that day is vague. I know that it was humid and sticky, and that the kids weren’t around. I had a sense of pride that I had gotten to the doctor and done the scan: I was looking after myself, getting the oil to tune up the engine.

The call came in the late afternoon. I was sitting on my bed, and was surprised to hear Dr. G’s voice because the scan had only been a few hours before. “There’s nothing wrong with your intestines,” she said, and I experienced a microsecond of relief—Ah, nothing wrong—before she went on, “but they found something very concerning in your liver.” A momentary pause. “They saw innumerable tumors there.”

Tumors. Innumerable. I didn’t know which word was more terrifying. At the sound of them, I let out an involuntary “Jesus!” “Yes,” she said, her professional tone softening, before hitting me with the next two-by-four: the radiographer had noticed something that looked like a shadow on my right lung. Since tumors in the liver are typically not primary, she explained, it was possible that I had one in my lung too. She’d arranged for me to have a chest CT the following day.

I put the phone down, and numbness set in. This was some kind of warped parallel universe, or perhaps a nightmare. Tumors. Innumerable. My brother and his clan had gone back to the U.K.; D was in London too. I called and woke him up: he could immediately tell that something was wrong. “I think you should come home,” I said in a tiny voice after telling him. “Yes,” he said, “I will.” Everything sounded stilted: it was as if we were reading from the script of a Lifetime movie. He let out an involuntary sigh, and although I knew it was irrational, I felt guilty for being an encumbrance. He was in a new job, and was still in the impression-making stage. Upping and leaving a conference would be noticed.

That evening, I got a voicemail message from my internist. “I imagine you’re freaking out, and I want you to know that this might be entirely treatable,” she said. I was spending the evening with C, a psychiatrist friend: we’d arranged to join forces while our husbands were out of town. C told me that from what she’d learned in medical school, it didn’t sound like I had metastatic cancer, and we got busy Googling other possibilities. I called my doctor, who speculated that it was Non-Hodgkins Lymphoma. “Let’s hang our hat on that for the moment,” she said. I liked the sound of that. A friend in England had had Non-Hodgkins Lymphoma for fifteen years and, as far as I knew, was doing fine.

The next day, in a brand new radiology department, I was led into a room with a scanner that looked like a giant, gleaming white doughnut. The test was over in ten minutes or so—wham, scan, thank you ma’am. A couple of hours later, a phone call confirmed my worst fear: a primary tumor in the lung, which wiped out the possibility of Non-Hodgkins Lymphoma. Everything shifted into high gear. D was flying home; my doctor was working the phones to get me squeezed me in for a liver biopsy the next day, Friday. She didn’t want me to have to wait over the weekend.

Doggedly, I put one foot in front of the other as the world spun. All of this made no sense. I’d always been the healthy one: while my parents and siblings had each had numerous surgeries and health issues, I’d been the outlier. I hadn’t even had my blood drawn until I was thirty—and then only because I was getting married in Massachusetts, which required a blood test. I was no fan of the medical-industrial complex: when diagnosed with uterine fibroids, I’d chosen to radically alter my diet and lifestyle rather than undergo surgery, and with discipline I’d beaten them into submission. Now, it seemed, I was staring into a tunnel of intense medical interventions with an almost certain early death at the end.

On Friday afternoon, D and I went to the doctor’s office to get the biopsy news in person. My internist, Dr. P, is a lovely woman who has always done her best, within a harried system, to make a personal connection. She entered the room, and there was palpable shock under her professional veneer. The cancer had metastasized from my lung to my liver, she patiently explained. Yes, it was definitely cancer. Yes, it had been staged: it was Stage 4. No, there was no longer a possibility that it could be anything else.

“In other words,” I said, my voice sounding unnaturally faraway and flat, “it’s the very worst it could be.” No, I wanted her to say, there are worse things. I’ve seen people recover from this. I believe you can heal…

“Yes,” she said, “it’s just awful.”

I stared into the darkness of the tunnel, a muddy scrim of fear and desolation clouding my view. I wanted my old life back—the imperfect one, with the unsold novel and stubborn belly fat and cluttered apartment. I wanted bike rides and leaves turning color and the smell of garlic and onions simmering in a pan. The luxury of a world where tragedy was a headline from Syria or Iraq.

Now I’d become a statistic. But I knew this much: I was a fighter. An uphill trudger. Resourcefulness was in my DNA.

I put my cancer on notice: Watch out, you fucker. I’m coming for you with everything I’ve got.

Read Chapter Two: Let’s All Do the Vasovagal Syncope