Thursday, July 17, 2014

SLOing Down and Fattening Up

What is the antidote to chemo? Hedonism. Pure, unadulterated pleasure-seeking. And in that, I am finding SLO county to be the perfect stomping ground, launch pad, and co-conspirator.

Since the move, I have experienced a profound physical change. The irony was not lost on me that to achieve a new, less stressful and more restorative lifestyle by moving to Morro Bay, I had to pass through one of the most stressful periods of my life—Micah transitioning from a high-profile job, getting a house sold, moving a family of four, uprooting from community, getting the kids through the last of the school year—all while suffering the rigors of treatment and investigating new experimental protocols….it was a wild ride. It really can’t be any surprise that I would not be able to get through the wash-out period for the trial I wanted to participate in—I was soldiering through, checking down my to-do lists, but the bearing down, resolute, getting-things-done posture is not really the way to get your health back on track. In addition to everything else, I experienced an inadvertent and rapid weight loss. Um, bad sign.

Doctor’s prescription: eat cheesecake. First I did a double-take (“Wha…that is NOT what I was expecting you to say!”) but then I didn’t need much convincing (see my previous post, “Why I’m Not Giving Up Dessert” and then double-down on that). Sudden weight loss in cancer patients can be a supremely bad sign: called cachexia, this wasting syndrome robs patients of energy and muscle mass and directly leads to up to one-third of cancer deaths. Eat cheesecake? You got it.

Waking up in our new house in Morro Bay, you can see the ocean. From bed. As soon as the move was complete, I felt physically transformed. Not merely the effect of a new treatment, but also because the burden of stress was gone. No more deadlines, no more traffic jams, no more parking headaches. My body settled and released. Thus commenced the hedonism.

At first, my program of eating to my heart’s content was disrupted by one of the first side-effects of the new chemo: mouth sensitivity and taste changes. Couldn’t eat anything spicy or crunchy or acidic. Strawberries tasted like metal. Cheese tasted like chalk. Lots of things hurt to eat. So I started focusing on texture, alternating between healthy delights like avocado-cucumber gazpacho and indulgent treats like Jello Chocolate Pudding—something I hadn’t put in my mouth in thirty years, but that satisfied a intense nostalgia from when I was a kid. And I took Theo to the supermarket and let him pick out five different ice-cream flavors to store in our freezer.

Around here, there is a farmers’ market in one of the surrounding towns every day of the week. If you miss it, you can still stop in at Dot’s farm stand and U-pick on your way home and grab some green beans, corn, or strawberries. Cal Poly has groves of peaches falling off the trees. Our days started to revolve around meal planning: I would start with huevos rancheros or a really custardy French toast, and by the time I was sopping up the last syrup, I would already be planning the gooey cheese on baguettes and watermelon-feta salad for lunch—or the chocolate mousse I’d need to chill for after dinner.

After two weeks of probably doubling my calorie intake each day, I saw a nutritionist at Stanford. I had “only” lost one pound. She told me to start adding avocado, sour cream, nut butters, and coconut oil to everything I could. Still more fat! Well, OK, if you say so.

I have never been a dieter or a calorie counter. I spent way too much time in France to ever go for the nonfat versions of anything. But I have for sure been dedicated to healthy eating, whole foods, home cooking for a couple decades now. And yet it is surprising to see what it’s like to really lift the bar and gorge. You take a step back and see all your prejudices (both good and bad) in a new light.

All of this eating has been accompanied by tons of fresh air and outdoor activity. Luckily, the beauty and the weather here just pulls you outside. Our place is located on a State Park and I walk or hike every day. Yoga, swimming—my energy and endurance have been steadily building.

And now I can report that I’m back up to my fighting weight. Hooray! But that doesn’t mean my renewed food obsession has gone away. My mouth is better now. I can crunch on the mushroom-leek tartines we made last night and savor the sweetness in the peaches. My mom offered us her ice-cream maker and for a second I hesitated (“another appliance?”) but only for a second. Think of the flavors we’ll make with the fruit around here! Raspberries are just around the corner.

They say San Luis Obispo is one of the “happiest” places to live in the U.S. This comes from a study by Dan Buettner, in his book Thrive: Finding Happiness the Blue Zones Way, where he identifies cities in the world with the highest quality of life. I don’t want to overplay this Oprah-endorsed, Tourist-Board-wet-dream sloganeering, but I do have to say that the man has a point. Perfect climate + no commute + natural beauty + food and wine galore + nice people = if not nirvana, at least rejuvenation. I’m certainly feeling it.

And if you come to visit, we’ll definitely fatten you up. The ice-cream machine is at the ready.

Tuesday, June 24, 2014

Wipe Out on Wash Out

I had never before dreamed of my own little rodent avatar. But once I heard about the oncology program “Patient Derived Xenograph”, which takes a bit of your tumor and grows it in your very own mouse model, I wanted in. The benefit was clear: if you had an in vivo model of your very own particular cancer, then different therapies could be tested on it first, to see what it responds to, before trying them in you. After taking months of chemo drugs to seemingly little benefit, the prospect of having a better bet through a process like this was extremely exciting. Plus, it was free—foundation funded, that is. “PETA be damned! Give me my mouse!”

The offer of the free mouse avatar came as a bonus, really, explained to me when I visited The Angeles Clinic recently hoping to enroll in an entirely different clinical trial, one I had been seeking for about a year over conversations with a contact at Genentech. It was an immunology trial, testing the ability of something called PD-1 to overcome your immune system’s “blindness” to cancer. For some reason, little understood for a very long time until recently, your body’s T-cells fail to recognize tumor cells as invaders, and so pass by them without reaction. The promise of this new therapy, and others like it in development, was to remove those “blinders,” so to speak, so that your immune system goes on the attack.

A couple of years ago, some extremely promising results, including some durable remissions, came from a melanoma study. (Good explanation of which, for those of us non-scientists out there, comes from Jerome Groopman in "The T Cell Army" in The NewYorker). Since then, even more tumor types, with more intractable profiles, like lung and renal-cell, have shown strong responses as well. The best promise of this new approach was that it would theoretically be applicable to any cancer type—not dependent on its site of origin.

I first learned about PD-1 therapy, as I mentioned, from a friend of a friend who works in this area at Genentech. In our first conversation, he called post-treatment scans of chest tumors melting away the equivalent of “onc porn.” This was a scientist who spoke a language I could understand!

On his advice, I flew to Baltimore in October, trying to enroll in a related study at Johns Hopkins. I stayed with an old family friend, saw the Cone collection at the Baltimore Art Museum, and lugged a couple hundred glass pathology slides over to the Hopkins labs. Turns out an aspect of my tumor disqualified me from participation. Bummer. At the exact same time, I got a phone call from my onc at home: bad scan, progression, time to start chemo again. Double bummer.

Ok, so eight months of chemo go by, and I get a new call from my friend: go to the Angeles Clinic in LA. They’re enrolling hormone-positive breast cancer patients—you meet all the requirements. This is the chance!

I consult my onc at Stanford: she says “Let’s go for it.”

I fly down to LA, where the clinic is about a mile from my in-laws' house. I am already planning my Beverly Hills recuperation lifestyle. Like a perfect or eharmony profile, I meet all the qualifications they are looking for: all they want to know is when I can sign on the dotted line. I break out my date book.

Oh, yeah, and one more thing: I need to go through a 28-day “wash out” period. Get all prior therapies out of my system. I am nervous about flapping out there in the wind, but I tell myself I’ll think of it as a vacation, a “chemo cleanse,” and add some daily green smoothie concoction to really round it out. I’m a California girl, after all.

Well. Cue surfer music: “da na na na na na na na da na na na na….Wipe Out!”

Couldn’t take the wash out for even two weeks. Started feeling horrible: pain, nausea, shortness of breath—it hurt to eat. I spent a fruitless day in the ER just to have them tell me I didn’t have a blood clot: “We’re sending you home with the ‘I don’t know why you’re in pain diagnosis’.” My liver function tests started skyrocketing.

Hmmm. All these months I’d been thinking the chemo wasn’t helping much, it was actually holding a giant conflagration in check. There’s a counterfactual assumption for you.

So we pushed the ejection button: I’m back on a new chemo line. And it is CRAZY but I feel so much better. My bilirubin dropped from 3.3 to 0.7 in one week. I’m no longer gobbling painkillers. I am eating salmon and lentils with gusto.

It is disappointing, no doubt, not to be in on this particular wave of experimental therapy, and darn it, I really, really wanted that mouse or two running out ahead and sniffing out the next best route. But it is also strangely relieving to know that the therapies I’ve been on have not been without merit, and that the one I’ve started seems to be effective already for now.

And the best part is, now that we’ve made our move to the Central Coast, looking out my window every day at the ocean is unbelievably restorative (beats the shit out of Beverly Hills—no offense, Baba and Muma). I’m sending the kids to surf camp this summer. I may just join them. I want to learn to wipe out the old school way.

Wednesday, March 26, 2014

Why I'm Not Giving up Dessert

Chocolate Cassis Scone. Not so much chocolate you can’t taste the dark berry, but enough melty richness to feel plenty decadent. The outside has a perfect golden crispness, the inside airy, flaky, rich with the texture that only plenty of butter can bestow. I am savoring every morsel with my pot of Earl Grey tea in my favorite patisserie in San Francisco.

By common wisdom, I am doing everything wrong. I am eating everything I shouldn’t be: white flour, animal fat, and—capital sin—sugar. How many times have I heard the reductionist mantra “sugar feeds cancer” in the past two years? Can it really be that simple? And what about pleasure? Not simply gratification, but the intensely savored pleasure of something as wonderful as a perfectly baked good? While we’re throwing clichés around, don’t the partisans of the “Life’s Short—Eat Dessert First” school have something there?

There are perhaps no more treacherous waters to wade into in terms of cancer survivorship than the debates about what one should and shouldn’t eat. The shrill or evangelistic tone these discussions about diet take remind me of the same tenor and fervor that any question of not breastfeeding would take in parenting forums back when I had children of an age to nurse—or wean.

I myself have been—admittedly—on every side of this debate, from my post-diagnosis juicing regimen (beets, carrots, fresh turmeric root!) to my full-throated refusal to give up yet another aspect of my life that matters to me. Sick of quinoa and green tea, I’ve thrown up my hands and said “I can’t live the rest of my life like I’m on a cleanse.”

I’ve yet to meet a single person diagnosed with cancer or another serious disease that hasn’t attempted to radically change their food regimen. Anodyne recommendations about a “plant-based” diet become, through the lens of existential panic, an embrace of vegan aceticism; “moderation” a palliative for our missteps when we can’t adhere to the austere doctrine we’ve convinced ourselves will ward off another recurrence.

But what’s behind all this emphasis on food, I believe, is an illusion of control. The causes of cancer are obscure and complex, encompassing inherited genetics and myriad potential environmental factors; the biology of metastasis remains very poorly understood even today. We have little control over the course of our disease, and so we overemphasize—radically—the part that what we eat has to play.

Thursday, March 6, 2014

Returning to Eden

On Sunday, February 23, my grandfather, the Canadian artist John Koerner, passed away peacefully in his home at the age of 100. I drank some champagne for him this week, as he once said that rather than put money in the stock market, he'd prefer to buy 100 cases of Veuve Cliquot and "sip it slowly." I also had the honor of speaking at his memorial in Vancouver last weekend, reflecting on our deep connection and how it grew and changed over the years. Below are my comments from his service. He is an eternal inspiration.

Johnny with Theo and Nathan, 2012. "Lighthouse" series painting in background.

Making it to one hundred is always a rare achievement, but even more rare is to live so well, with such lucidity and grace, as Johnny did for all that time. I count it among the greatest gifts of my life to have had my grandfather a close part of it for so long. In particular, I think often about what the last dozen years have meant. If Johnny had left us at eighty-eight, he would have still had an exceptionally long art career, a fifty-plus-year marriage, a loving family that included four adult grandchildren who could converse intelligently about his love for Japan, or his dislike of Schopenhauer; who could mix him a decent martini and try again at his insistence to read the pages of his adored Bô Yin Râ's philosophy.

I would still have been able to cherish childhood memories of Johnny telling us Bubbledog stories, teaching us to play checkers, gin, and even poker, and making wry jokes just when you least expected him to. He was a unique combination of European formality and an incredibly open sense of wonder. On the one hand, his precise gestures at the dinner table: pressing a finger to the wood-grain to pick up a stray crumb, always the napkin rings, tea cozy, rye bread. On the other hand, finding beauty in the pattern of wet leaves on a sidewalk, or a cast-off metal stencil of the number 5 that he turned into abstracted patterns in his paintings, or lighting up with his conspiratorial giggle. Once, waiting for the ferry to Victoria, when my brother Brian and I, with cousins Taylor and Jason, were playing in a playhouse pile of multi-colored balls, he took off his shoes and jumped in. Where there was joy to be had, he claimed it.

All of that stays with me. Yet the past decade or so has been a marvel.  First of all, I saw him fall in love—exactly like the proverbial lighting bolt or Cupid’s arrow—and I witnessed what an incredible thing it was for him to find such compatibility and happiness with his second wife, Lisa. You could see that rediscovering love at this time in his life was an unexpected revelation, and it was deeply moving to witness.

Secondly, my own children came to know Johnny. Nathan flew kites with him on visits to Vancouver and challenged him to a chess match during a stay in Palm Springs. Most recently, my sons were able to not only celebrate Johnny’s 100th birthday, but went around town making a movie called “Secrets of a Centenarian”—interviewing family members and friends on their favorite memories with him, and filming each other giving impromptu docent tours of Johnny’s retrospective in Penticton. Even Theo, only 6, could without prompting tell you that this canvas represented a kimono, but also looked like a gateway, and also a harp. They heard what Johnny was saying in his light-filled paintings.

Monday, January 27, 2014

The Unanswerable Question

How ARE you?

Truly, it’s strange that such a simple question is so hard to answer. On a day-to-day level, it changes all the time. If you ask me in passing, the answer might be a simple status report: “fine,” “not bad,” “a little tired,” or “crappy.” If we are sitting together over a cup of tea, I might go a little deeper, talking about how treatment takes a toll over time, or about how my kids are doing. But this doesn’t really get to the heart of the question.

Because the heart of the question has to do with the bizarre incongruence between how I look, which is seemingly fit, normal, with no outward signs of illness, and the dire diagnosis that I’ve been given. It doesn’t fit. It doesn’t make sense. And no matter how many times we try to make the two truths intersect, it is never less challenging to find that ven diagram where “She just hiked 11 miles” and “She has advanced breast cancer” overlap. Believe me, it doesn’t make sense to me either.

I’m fine for now. I went to yoga this morning. We took the kids boogie-boarding last weekend when it was 82 degrees in Morro Bay. We sat on the patio at night and looked at the stars. At the same time, I get an ache in my hip and I wonder to myself, “am I sore from yoga?... or is that bone metastasis?” I can be in the middle of cooking a meal and laughing with friends, and still, in another register of my mind, there is a constant monologue going, a thrum of “how long will this last?”

Tuesday, December 3, 2013

Elegy for Lenore

Open closed open. Before we are born, everything is open
in the universe without us. For as long as we live, everything is closed
within us. And when we die, everything is open again.
Open closed open. That’s all we are.
                        —Yehuda Amichai

I love this piece of poetry and I think about it all the time—the way before our existence we are part of the limitless pulse of energy, and how we are returned to it after the short parenthesis that is our individual bounded life. In this vision, death is like a new breath, a universal exhale, a release back into the all.

Lenore Lefer taught me how to die. Which is to say, she taught me and twelve other young women with cancer how to live while dying—which is what we’re all doing, by the way, cancer or no. I met her at a weekend retreat at Commonweal, an extraordinary organization right here in Bolinas, that runs Cancer Support Retreats, which integrate the best comprehensive knowledge on healing, from cutting-edge medical research to supportive nutrition and techniques for stress reduction. The center does advocacy work on the links to carcinogens in the environment. But when one is there for a retreat, their work is utterly different: to coax you out of your shell of grief and shock, to appeal to what you most want your life to be about, and by helping you envision it, to bring it in to being, for whatever time you have.

Tuesday, September 24, 2013

Lilith, the Uncanny

When I was asked to contribute an essay to the SFMOMA blog, Open Space, in conjunction with the exhibition Beyond Belief (which is being shown at the Contemporary Jewish Museum through October 27), they told me I could focus on any single artwork of my choosing. The exhibition includes iconic works by Mark Rothko, Wassily Kandinsky, Alberto Giacometti, and many other celebrated modern and contemporary artists, any of which would be compelling to linger on in detail. But for me, the choice was immediate. Around the corner of the very first gallery, you encounter a startling presence: you come eye to eye with a woman hanging upside-down. The uncanny presence of Lilith.

Uncanny is the right word for her: from the German unheimliche, uncanny means the opposite of what is familiar, the flipside of home. We use the term to describe something that is supernatural or eerie, but the root of it contains a duality--it connotes an object or experience that is both foreign and intimately recognizable at the same time. Dejà vu can be an uncanny experience; we think "I've never been here before" but "somehow, I've been here before."

Lilith is like that, since she is not named in the biblical text of Genesis, but haunts our tradition nonetheless. Absent more than present, she is a great instance of how what is not said in the text can generate as many meanings as what is said.

She is also intrinsically Jewish--a combined product of scholarly exegesis and folkloric superstition. As Aviva Cantor Zuckoff put it in a seminal 1976 article reclaiming Lilith: "No non-Jewish source tells of a female struggle for equality or gives it as a reason for the vengeful behavior of a female demon. This is especially important to us in exploring how the Lilith myth connects with our unique history."

This coming Shabbat, the day after Simhat Torah, when we roll the Torah scroll back to the beginning, to begin the beginning again, we'll read Genesis 1, from which Lilith derives. All through Genesis, we are presented with alternate branches of the family tree--Lot, Ishmael, Esau--the other side of the family that is related to us, but is not us. As Adam's co-creation, woman before Eve, Lilith is the first instance of this concept of the road not taken, the shadowy counterpart, the unspoken alternative. 

Reading "In the beginning..." and "Let there be..." and "it was good..." all for the umpteenth time, can we not be lulled by the familiarity of the passage, but rather look at it from the perspective of the uncanny? Where is the shock of the strange? How can it be a signpost of forgotten possibilities?