Reconstruction

It was a year ago--just after the last family members had clambered a little heavier from the Thanksgiving weekend's multiple feasts into cars to take them southward--that I rolled over one morning and felt the hardened spot that would lead to my breast cancer diagnosis. A year ago this week. I really don't want to mark time this way; it's not something I want to commemorate, it's recovery that should be the focus, not the moment of the dark news that bludgeoned it's way in like a vicious intruder. But despite everything, it looms in my path, like a fallen tree I can't circumnavigate. It's like a Yartzeit I don't want to observe, an anti-versary.

It's been a long time since I've written, I know; I've been struggling with what I want to say, with how to express the peculiar mix of euphoria and anxiety that is this post-chemo landscape. It would be simplier to leave the narrative arc of b'matzav at the conclusion of treatment--looking forward to the growth and recovery ahead. But that would be so very untruthful, so deceptive as to the shape that healing takes for cancer survivors. It's not over. It's never really over.

Treatment continues, in the form of hormone therapy, a multi-year prospect. And though my Oncologists at Kaiser have released me back into the wild, so to speak, letting me resume normal schedules of life, work, and travel free of the weekly visits to the infusion center, the follow-ups do follow sooner than you expect, the blood tests and scans punctuating the calendar with quarterly incentives for sleepless nights and anxiety attacks. I am not, by nature, an anxious person; truth be told, I don't think I really understood what anxiety felt like before this experience. Now I am squarely a member of Team Ativan.

In the past two weeks, in the midst of seemingly wonderful events, like visiting New York for the book launch of an architecture publication I recently edited, or gathering with family for the holiday, I have found myself with a knot in my stomach and my pulse racing. Or aggravated beyond reason at the check-out person or while trolling for parking. When walking the streets of post-Sandy Manhattan, I felt the heady buzz I always feel in that glorious city, but it was tinged with a sense of precariousness, both for New York and for myself. My excitement became mired in fear--"oh no, flying too high, nowhere to go but down."

A woman I know who is three years out from her breast cancer diagnosis says that she is just now getting to the point where she can have a day where she doesn't think about it.

Physically, I feel great (as I've said to many, "there's nothing like six months of chemo to make normal feel positively spectacular!") but how is one ever to trust this sensation? I had never felt more fit or healthy in my life as I felt precisely one year ago, wearing my skinniest-ever jeans while preparing Thanksgiving turkey. I was disabused of that feeling with a single phone call. 

Someone very close to me went in in the past week for a biopsy--thankfully, negative, but the morning it was happening I was close to hyperventilating, feeling what I can only liken to an episode of PTSD. My previous post on post-traumatic growth notwithstanding, I was somewhat taken aback by the force of the physical response I had to the apprehension of someone else I love being stalked by cancer. Even with the relief of the negative results, my anxiety has not completely dissipated. Doing battle with insomnia, I tried to chase the cause, as though I could pinpoint an exact correlation. Then I realized it was the time of year--revisiting the same scarred patch of time when the rift occurred, you're forced to tread over this fissure like the open trench of a fault line.

I talk to so many other women who are beset with the same demons--the emotional legacy of what's already taken place, the deep worry that the worst may be yet to come--and this is a big part of cancer's toll, long after one's hair has grown back. We've known the deception of considering ourselves well, but when do you stop considering yourself sick? When do people stop saying the misheberach for you? What does refuach schlemah (complete healing of body and soul) really entail?

And I'm going back in for surgery later this week. To complete the "reconstruction" process with permanent implants. The funny thing is how marginal in importance it seems to me now to have reconstituted breasts. A year ago I could make morbid jokes about the benefits of a new rack; now they seem almost incidental. Like superfluous ornamentation.

Because reconstruction of one's sense of oneself will be so much more of a piecemeal and faltering process. Not by way of anesthesia and silicone. It would be enticing to think of ways that the dark side, the anxiety and fear, could be extirpated, surgically or ritually, even. When Micah was a chaplain at UCLA Medical Center, he was once asked by a patient to help her perform an exorcism. At the time, it seemed loony-bins to me; now it seems a perfectly comprehensible desire. I can't say as I wouldn't welcome a little good ole fashioned demon evacuation: "Oh Lord, give us the strength to cast out this devil anxiety, this tormentor of sleep and stomach acid! Let this darkness be cast forth and let the light of peace shine upon her!"

Ahhh, if only it worked that way. I hope that with time and distance I can stop binging on doubt, stop being a glutton for uncertainty. I will acknowledge and savor the extravagant grace of moments of rest, peace, pleasure, without any tinge of fear. I'll get there. Someday. But for now, let the Ativan flag fly.

Post-traumatic Growth

“The obliterated place is equal parts destruction and creation. The obliterated place is pitch black and bright light. It is water and parched earth. It is mud and it is manna. The real work of deep grief is making a home there.”

—Cheryl Strayed, from Tiny Beautiful Things: Advice on Love and Life from Dear Sugar

Cheryl Strayed is not Jewish and she claims to be an atheist. But for all that she can sound very rabbinic. In her advice column for The Rumpus, under the pseudonym Sugar, she is worldly and wise, foul-mouthed and soul searching, fierce with passion and unstinting in the depths of her compassion. She gives many readers a kind of spiritual care.

She can do this because she has herself traversed deep turmoil—abuse as a child, abandonment by her father, the loss of her mother as a young adult—and can speak openly about her own experiences in a very raw way that also illuminates a path to healing. What she writes is like no advice column you’ve ever read before, because what she offers is never a set of do’s and don’ts from on high, but personal essays that are as unsparing about her own mistakes as they about those of the people who write her. I think she inspires trust because she is generous in what she divulges.

The advice column, like the therapist’s chair, is in many ways a secularized version of what would once have been seeking guidance—or absolution—from clergy. One of the most powerful letters in her collection is one she wrote to a father who had lost his only son at the age of 22 in a car accident, who years after the event was still incapicitated by his grief. In this response, she writes about “the obliterated place”—the place within, scorched and seared, where you carry your deepest sorrow.

Sept. 12

On September 12, 2001, Micah and I stayed in a suite in the Venetian hotel in Las Vegas. It was huge, palatial. It had a marble bathroom bigger than my apartment at the time, with marble lions and gold-plated faucets pouring into the jacuzzi tub. The lobby, which bled seamlessly into a mall of high-end shops, had an eerily lit, faux-blue sky.

Neither of us has ever stayed at the Venetian—or any other mega-resort there—either before or since. For us, nothing ever had to “stay” in Vegas, because we simply never went there. No bachelor parties or girls weekends. No spur-of-the-moment, “Vegas, baby, Vegas!” road trips. Not even a Celine Dion concert or visit to the Guggenheim or ironic jaunt to the idyll of postmodern architecture.

We were there because a day earlier we had been in Sun Valley, Idaho, happily ensconced in my family’s time-share condo, hiking and reading and watching deer walk by on the path above the river from where we were reading Levinas on the living room couch, when we got the call from my mother to turn on the television. Actually, to be accurate, when we got the call, we were asleep. We turned on the news after the planes hit but before the towers fell. After approximately twenty-four hours of watching, when airports were at a standstill and no plane was flying anywhere in North America, we decided to drive home to Los Angeles. We were numb anyway, we might as well be staring into the blankness of the Nevada desert. There were stretches there that we couldn't even get the radio. When we drove until we couldn’t drive any more that day, the place we were in was Las Vegas.

Update on Detox

Since I last posted on my outrage at Kiehl's and other "beauty" products with dangerous and/or questionable ingredients, there has been a significant development: Johnson & Johnson, one of the world's largest purveyors of cosmetics and personal care products, has pledged to phase out all carcinogens, such as formaldehyde, as well as parabens and their ilk from their products. (Read the New York Times piece on this development here). Breast Cancer Action and the Environmental Working Group, in their Campaign for Safe Cosmetics, are using this victory to pressure other large corporations, such as L'Oreal (which owns Kiehl's) to take similar steps. To participate in this campaign, see here.

Detox

In Todd Haynes’s eerie film Safe (1995), Julianne Moore begins as a 1980s housewife ensconsced in the suburban dreamhouse—awash in saccarine hues of turquoise and pink. She develops a mysterious illness, gradually becoming ever more allergic and ever more intolerant of the environment around her—from her hairspray to her overstuffed couch—until she ends the movie living in quasi-isolation in the New Mexico desert.

I was reminded of this movie—or really, of this feeling of impinging horror, a sense that everything around you is toxic—this week as I put my home through a detox regime. Long ago, I retired my microwave and got rid of all my plastic food-storage containers, with the well-publicized campaign against Bisphenol-A or BPA, which was a staple component of tupperware and baby bottles until a few years ago. I knew then that BPA was an endocrine disruptor—basically, that it messes with your hormones—but here’s a zinger for you: it’s not that we just recently discovered this as a secondary effect, BPA was developed in the 1930s as a synthetic estrogen to prevent miscarriages in women! How it wound up as an additive to plastic products is beyond me.

What set off my more recent round of purging was this: parabens. Other estrogen-mimicking compounds that are added as preservatives to personal care products. To be specific, I went down to my (previously) favorite skin-care company, Kiehl’s, to get some face cream for my chemo-whipped cheeks, only to discover that this product—and everything I have been buying from them for years, including products from shower gel to sunscreen to lip balm—is chock full of parabens. In recent studies, parabens have been detected in 99% of all breast cancer tumors. That it is present is not the same as saying it is causive, but clearly there is a problem here! The manager of Kiehl’s tried to feed me a line about how their stuff is FDA approved, which is a complete lie, since personal care products are neither food nor drugs and the entire cosmetics industry is completely unregulated—which means anything goes. And the high-end cosmetics lines are some of the worst offenders.

Against Invulnerability

There are many women in my BAYS support group who are mothers of young children. A common thread of conversation tends to be not so much the logistics of this, but the emotional force and impact of being a mother who is ill. It is not only the first consideration when debating treatment options and the primary worry when thinking about being even temporarily incapacitated, but it dictates how we let ourselves process the experience. One woman at a recent meeting—her first—said she came prepared to cry because she hadn’t let herself do that at home, not wanting her children to see it. A friend of a friend told me she never let her children see her even once without a wig. Afraid, overwhelmed, mothers want to shield their kids from anxiety and the brute force of strong emotions—but this comes at a great cost. I don’t think it does us or our children a service to maintain this veneer of invulnerability.

From the beginning, we spoke to our children very frankly and directly about my cancer and about what they could expect to happen. Nathan, almost eight now and relentlessly inquisitive, has asked constant questions, “How did you get this? How long will you be in the hospital? Are there any other side effects of chemo that you haven't told me about?” Still a preschooler, Theo's understanding is more limited to the practical effects, “Who will pick me up from school?” and “If you had an operation on your chest, how do you eat?” (It seems he thought I’d been cut in half at the level of the upper torso). When I first came home from the hospital after surgery, they relished finding ways to be helpful; they even gave me a whistle to blow from bed if I needed anything, and when I blew it, they would come running (“I really should've gotten one of these things earlier!” I thought).

The Trouble with Expectations

A few weeks ago, Micah and I celebrated our tenth wedding anniversary. I use the word "celebrated" loosely, because it was not at all the anniversary we'd planned. For the last couple of years, we'd been plotting to take over all of a boutique hotel in Palm Springs (as we did on our original wedding weekend) and invite a bunch of friends to come spend the weekend there. Some would have been at the event the first time; others have become such close friends in the intervening years that it's hard not to photoshop their faces back into the reception photos, difficult not to see them there in the mix of that wild, forty-five-minute hora! We didn't plan on renewing our vows or anything. We just wanted a weekend in the pool. And a really good party.

You'd be surprised that this plan was one of the things we thought about very early on after my diagnosis--would we be able to complete treatments in time and still go ahead with it? By this point, I had a contract in hand with the place we had selected, and I'll admit, some stubbornness about going forward come hell or high-water. But, not long later, and on the advice of some friends who would've been the first ones on a floatie, martini in hand, we reluctantly cancelled the deal. Everything was just too unpredictable.

It was the right decision too, because come June 9, I was in a wretched state. The day before was a Friday, and it was my worst day yet: throbbing head, aching body, could barely climb the stairs in my own house, I was a basketcase. Intuitively, mid-morning Micah called, and I fell apart on the phone; we were supposed to have people over for Shabbat dinner that night, and I was useless. Micah cancelled his appointments and came right home; he drove me to a massage and later put me in bed; he found someone to fill in for him at services that night (bless you David Malman!), cancelled with the guests that were to be coming to dinner, and prepared a wonderful dinner for our family himself. On the cusp of what I wanted to be the best anniversary party ever, I had been approaching total misery; instead of that, I got one of the most beautiful and memorable Shabbat dinners in a long time.

More importantly, I got to deeply appreciate that I really, really married the right person. The one who knew what I needed before I could ask for it, before I knew what I needed myself. He showed me so much devotion on that day. That was a celebration of the deepest values of marriage. So much more than a pool party would've been.

And what's clear to me in telling this story is something about the nature of time: how hard it is to plan for the future when so much can change so quickly. How hard it is, and perhaps misguided, to try to recapture an occasion from the past. "You can't stand in the same river twice"--right? It's no longer the same river. Or as Rabbi Alan Lew once put it, "The truth is that our lives are a constant flow, utterly devoid of stopping places." We try to cling to the past, instead of facing the onrush of what is to come.

Ironically, a few weeks later, on June 23, I was indeed in Palm Springs. At the site of our wedding, no less. I was there to officiate the wedding of my youngest cousin, who had chosen the same spot as we had, the Palm Springs Art Museum, for her reception. Yes, I did say officiate (civilly, of course). The Museum was designed by our grandfather, E. Stewart Williams, who named a skylight within it for my grandmother, who filled his life with light, and both my cousin and I feel a great bond with this place and with the symbolic resonance of the architecture. It was an unexpected honor to be asked to perform the ceremony for her and her husband, themselves both architects. I was feeling as healthy as if nothing were going on. I got the opportunity to inaugurate a new marriage, a new stepping out into that onrushing stream. It was infinitely more momentous to be there at that moment of inception than to try to grasp back to ten years ago. We are somewhere else now. And it's rich and full too, even if it's not what we possibly could have predicted or desired.

But for our 11th anniversary? All bets are off!