Saturday, July 26, 2008

The Summer Day

Thursday, July 24

It’s raining. Not men, not cats and dogs, just those fat, tinny, acid drops of wet that fall endlessly and hopelessly to go splat and stream down the windows and soak and spongify the green grass and splatter mud all over the vegetables. The raspberries are drenched, the driveway has run off into the lawn, and the constant downpours have cast a bleak shadow over everyone’s moods. Yesterday, when we were still tired and spent from our weekend festivities and our Mon-Tues Boston trip, we were glad for the constant drizzle and cooler temperatures, for the excuse to stay at home, inside, where we could slowly unravel ourselves from the sticky busy-ness that has defined our last week, and recapture some energy from sucking in the glow of the Pirates of the Caribbean illuminating the TV screen. But today, when we’ve slept off our over-stimulation from the Boston and Festival crowds, rested our ear drums, and unpacked our bags, we’re ready to head out again, and yet, the rain keeps us in, and I wonder where the Cat in the Hat has gone to with Thing One and Thing Two—it’s been that kind of a day.

We've had a string of long, tiring, packed days lately. Over the weekend, the wonderful Green River Festival, where we baked and sweat in the hot sticky sun with the multitudes—“Just like a New Jersey beach,” Jim said, and promptly fell asleep—stuffed our bellies with Bueno Y Sano burritos, whole-belly fried clams, and Bart’s ice cream, ran into countless friends and neighbors and, the best surprise of all, my brother Will and his girlfriend Ariel, and kicked back to some great music—Mavis Staples, Jimmie Vaughn, Forro in the Dark, Los Straitjackets, and Lucinda Williams—caught me watching the unfettered, spontaneous expressions of joy around me, in the kids zooming about, in the all-out performances on stage, in the unabashed bits of dancing here and there, and I wondered: where was mine? Where had my ability to dive deeply into the subterraneous layers of delight and cough up some groove of my own gone to? I felt so stilted, so stunted, so completely inside of my stupid head, and all I wished was that I could cut loose, dance a little without worrying about how embarrassed Luke would be (and he would be, perhaps to the point of disowning me), and grab a little something for myself. I felt positively shy again, something I hadn’t felt in a long while, not since that overly self-conscious feeling made me hide behind my father’s legs as a child and later, as an adolescent, try to blend in during junior high school dances. It wasn’t until I discovered the rush of a good (or bad, depending on who you talk to) drink, and the sneaky way it had of pushing me into my depths and releasing me in my wilds, that I was able to find my courage, however artificial and contrived it may have been, to reveal a little more me.

Since I can no longer rely on having a few gin and tonics to loosen me up and accompany me to the dance floor, I have to dig deep, deeper than I used to. (And if it’s dark out, and no one can really see me, that helps too.) I made a little promise to myself: that next year, I’d hit the dance tent, and even if I hide in the back shadows, I’m going to dance. I am hoping that my spectator days are over. But I cannot lie, watching those around me was fun. There was the shirtless guy with long hair waving his arms all about, keeping rhythm with some kind of seismic beat in his head. There was the woman who jumped in front of Luke over and over again, and shook her hips, which were rather large, totally blocking his view of the stage. And there were the stoned 50-somethings next to us, who every now and then would rise to their feet in a kind of a pothead salute, upper body barely skimming a beat, eyes blazing red. There’s a certain sport in people-watching, particularly when there are smatterings of suddenly-inspired white people dancing (rather badly). I figured that some of them must have disregarded the no alcohol (not to mention the no drugs) rule and left their teenagers behind as well.

But it spiraled me into a new thinking: that joy lives inside, to be unleashed at any given time if the moment presents itself, and that we can spend our lives looking outside ourselves for that which rages within. We all have different ways of feeding our spirit, but feed it we must. And I, with all the vagaries of the past six months, have all but shut down the feeding tube. But this withering-on-the-vine bit does not work for me. I realize that I have not danced enough, I have not belted out those songs that have carried me through the darkest days of my misspent youth, I have not reached in and let myself go, somehow too afraid to bother or embarrass somebody, be rebuffed, shushed, or silenced. How silly of me. It was there all along. I just need to let it go, and it’ll come back to me.

Boston, too, offers great opportunities for people-watching, and for two days after the Festival we walked about the city, making our way through the throngs of tourists at Quincy Market and noshing on chicken biryani and gelato, checking out the sharks and penguins at the New England Aquarium, and playing with the art of Anish Kapoor at the stunning new Institute of Contemporary Art. Those were the highlights.

Back at our hotel, the Boston Westin Waterfront (a priceline name-your-price score!), the National Association of Letter Carriers spilled into every possible space, buzzing here and there in their personalized vests and, what else!, walking shorts. The elevators were filled with transistor-radio blaring, beer-can toting, leather-vest wearing partiers. There was a lot of red, white and blue, a lot of Patriotic-speak floating about (I heard “This makes me proud to be an American” more than once), and a canister full of McCain pins at the hotel store. With just one Obama pin left, we wondered: had all the other Obamas been snatched up? Jim thought he saw a sign welcoming Hillary Clinton to the convention, and overheard someone saying “Thanks for bringing Hillary.” Maybe that explains it.

My first thought when I saw them was that I hoped none of them would go postal on us. Do you think they get that a lot? A guy at the hotel restaurant told us that he hoped they made them check their weapons at the door. Har-har.

The other group sharing our space at the Westin? Why, some organization of medical oncologists, of course. How fitting.

I saw my oncologist at MGH that afternoon, the whole reason for our visit to Boston. I hadn’t seen her since my first meeting with her way back in April, a visit that was filled with the anticipation of waiting to hear what my treatment—chemo or no chemo--would be. Again, as they had at Dr. Pitts' Faulkner office last week, shadows of fear greeted me as I arrived at the Yawkey building and scanned the names by the elevator, running through all the cancer centers until I find mine: the Breast Center.

There were reminders everywhere that this visit was about cancer, my cancer. My visits with Dr. Pitts this spring have been about the reconstruction process, the cosmetic, cosmic recreation of my left breast, a step by step sculptural, surgical escapade that has not, directly, been about cancer. The literature in Dr. Pitts’ Wellesley waiting room, which she shares with a plastic surgeon who lifts baggy eyes and fixes bumps on noses and the like, is all about procedures to improve upon your fading good looks, and the books that line the walls of the examination rooms are filled with before and after photographs, some stunning, some so subtle I couldn't tell what had been done (yes, while waiting for Dr. Pitts, I perused one of the books and decided that this was not a world I would want to spend much time in). But at the Yawkey Breast Center, where the carousels are lined with breast cancer literature, and the patients filling the seats stretch across the full spectrum of cancer treatments, it’s all about the cancer—about making sure there’s nothing new going on, my cells are behaving themselves, the Tamoxifen is doing its job without compromising my good health, and that I understand just how lucky I am to have dodged the chemo bullet.

After walking from Faneuil Hall, where we sat through a 30-minute ranger presentation and learned just how pathetically (the ranger's word, not mine) ignorant most people are when it comes to US History, I arrived early at MGH--nearly twenty minutes before I was instructed. The nurse took me in to get my blood work out of the way, and I realized that I had a full hour before my appointment with Dr. Ryan was slated to begin. Another nurse took me into an examination room to take my vitals--I had to remind her not to take my blood pressure on the left arm--and I returned to the waiting room to try to find a magazine and read about something other than Talking to your Teen about Cancer or Chemotherapy and You. After about an hour of sitting and sweeping through the pages of a glossy Travel mag, I was aware of how tired I suddenly felt--all the festivities of the weekend, the late nights, the city stimulation, and the added drain of having just been dealt with the unexpected (though it should be expected by now, given its uncanny ability to show up, like clockwork, around significant doctor's appointments and surgeries) pleasure (not) of getting my period a week late, all piggybacking together to squash me deep into my chair. A woman came out to tell me that Dr. Ryan was running late. Ah, of course. Ask me to arrive an hour early for bloodwork that takes three minutes and then have me wait for another two hours.

But this is where I was, waiting my turn with all the other patients, some more obviously cancer than others, with their shorn hair, tremulous brand of moxie and spunk, and chemo-drip chills, and there was nothing I could do about it.

By the time Dr. Ryan arrived in the examination room, I had put on my johnny and read everything on the wall in sight. I had even begun to work my way through a gossip magazine, that made me trashy and ashamed (just kidding, there were some great photos of stars in their bikinis that made me feel much better about my post-surgical body). Dr. Ryan looked about as tired as I felt, as she gave me a very thorough breast exam (everything seemed fine), asked me how I had been feeling on the Tamoxifen (hot! way too hot!), and offered a prescription to counteract the hot flashes that have been making me feel as if I'm standing in front of my seventh grade class giving a presentation and my face is burning red hot and I feel like I'm about to pass out (more meds? no thanks, I told her, I'll suck it up).

As we talked, rather hurriedly, she reminded me that I'm one of the lucky ones, that there's not much to worry about, given that I'm "perfectly healthy" (uh-huh, I thought, except for the fact that just recently, there were some renegade cancer cells doing their wacky sideshow of strange cell-splitting gymnastics in the left breast area). It's obvious that she sees so many women who are in such worse shape than I am, women nearly decimated by their cancer, or by the chemotherapy, or by other health issues, that by contrast I am perfectly healthy, lucky, golden. And I suppose I should feel lucky, and most days I do, but that afternoon I was feeling so boggy and low that I did not feel lucky at all, just exhausted, and sick of all the cancer talk, the endless stream of doctor's visits, feeling disabled and weak and not myself, and wanting, desperately wanting to be out of there and far away from all things cancer, to be done with it, to be assured that the cancer will not come back, ever, that I don't have to worry about it day in and day out, that I will enjoy not twenty, or even thirty years out, but forty, fifty. Can anyone tell me that? It's really all I wanted and want to hear.

I was somewhat caught off guard by this sudden stranglehold of self-pitying melancholy, but found the underpinning of fervent calm--my attempt at keeping it all together for the camera--to reopen the airways and breathe again, and make my way back to the hotel.

I suppose I am quickly learning that I don't really want to think about the damn cancer much at all--except in the way that it is pushing me towards living and breathing in a new expanded present, an enhanced awareness of what really matters to me, of what's happening now, a shifting but central place of calm, where I can appreciate the little specks of bling and joy throughout my day, and not worry so much about the outcome of everything--relationships, projects, medical tests, lifetimes. The joy will come, I tell myself, little by little. And there is reason to celebrate. My new girl is working out quite well. She feels a bit bionic--when I contract my pec muscle on the left side, she tightens into a ball and squeezes up towards my chest. And there are summer days still to enjoy, and Fall to look forward to. Tell me, what else should I do?

The Summer Day

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean--
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down--
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everthing die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?

~ Mary Oliver

Tuesday, July 15, 2008

Eye Candy

My days teem with the urgency of the constant demands of the overflowing berry crops, must pick, must pick, and the shortening of summer days, which spill from one to the other so quickly that I scramble to grasp a moment that feels like mine. For so long, I have measured out my days by remaining jail time, days left before my next procedure or doctor's appointment, that I have to really strive to stay in the present. My calendar remains at the mercy of visits with the plastic surgeon, oncologist, physical therapist, acupuncturist, chiropractor, and dermatologist, a ceaseless parade of appointments that clutter my calendar with an annoying persistence. Where are all those blank canvas days that I have been craving?

And yet, I feel incredibly lucky to have assembled such a great team of docs and body workers, a real medicine wheel of wisdom and warmth. I like them all.

Since my exchange surgery four weeks ago, I have seen my wonderful plastic surgeon, Dr. Pitts, three times. Once, three weeks ago, when my mother drove me in for an overall check to see how things were healing. A second time, a week after the first, to clip the ends of the stitches, make sure the implant was in a good position (it was), and reinforce the restrictions and status of the remainder of my jail time (no wearing bras, no lifting of more than 5 pounds on either side, no rigorous activity, no sleeping on left side, and a final check in two weeks to make sure all was well before gradually resuming normal activity). Dominick and I braved an amazingly fierce hail storm just as we were leaving her Wellesley office; thunder boomed and wind bent trees as torrential rains flooded the parking lot and hail stones dropped on all the cars, setting off enough car alarms to reenact a chorus of peepers in a springtime pond. And just yesterday, I saw Dr. Pitts for the third time, driving into Faulkner Hospital in Boston with Luke and Dominick, my trusty, if forever squabbling, companions.

A few days before my appointment, I received a letter from Lisa, Dr. Pitt’s administrative assistant, confirming my nipple construction on August 19th at Newton Wellesley Hospital. “Enclosed you will find nipple placements,” she wrote. “A few days prior to your surgery, it is important to try one on in the standing position and lying down checking in the mirror for correct location/placement to match the opposite side and remove it. The morning of your surgery, it is necessary to wear one to the hospital. Dr. Pitts will review the placement with you prior to your procedure.”

Nipple placements? I looked in the envelope: no nipple placements in sight. Of course, I wasn’t exactly sure what I was looking for. A stick-on nipple with adhesive back? An areola-laced nipple cut out from cardstock? Drawing? Photograph? Watercolor?

Clearly, Lisa had forgotten to include the nipple placements in the envelope. Shall I make my own? Hey kids, let’s make nipple doilies today. Mom needs to try to figure out where her new one should go.

This third visit with Dr. Pitts would be important: I could ask her about the nipple placements (would they be anything like nipple tassels?), I would, I hoped, receive her permission to start dancing through life again, and I could hear more about my next procedure: getting my new nipple.

Once we arrived at Dr. Pitts' office, the boys settled in with their books, and I was able to ask Lisa about the missing nipple placements. “Oh, I always forget to put those in the envelope!” She handed me a few packages of round bandaids. That’s it? Round bandaids? What a let down! "Take these home and try one on to see how it looks. You might need to move it a little bit before you find the perfect spot.”

As I walked into the examination room, I felt a phantom of old terror wash through me. I hadn't been to the Faulkner office since my initial consultation with Dr. Pitts months ago, when I was nearly shaking with fear--but swallowing it all down--unsure of what to expect, of what the pathology reports might bring, of what kind of treatment the oncologist would recommend. I still had my left breast then, and so much ahead of me. And now?

Dr. Pitts told me not to worry about the nipple placements. “We’ll go over exactly where it should go before the operation.” Good thing, because I was thinking that I'd probably get it all wrong, and knowing me, my new nipple would end up completely left of center. She reminded me that the procedure would be done in the operating room, under local anesthesia, so there will be no need to fast before the procedure, and no long, drawn-out detox afterwards. Hurrah for small miracles. After four surgeries in six months, I don’t think my body can tolerate more general anesthesia. But I did wonder: given the local anesthesia, will I be compelled to watch my new nipple being constructed, or will I close my eyes, find my inner Zen zone, and try to meditate on something other than the iciness of the incision slice, and the muted pull and tug of skin as Dr. Pitts somehow transforms skin from my poor-beaten up left breast into something resembling a nipple? It’d be a helluva lot easier if the nipple could be constructed down by my toes.

Dr. Pitts explained the procedure again, how she will use a flap of skin from my left breast to create the nipple, and that though I will be fully awake, there will be a sheet in front of my face and everything but the procedure site will be covered. I feign disappointment: Oh, so I won’t be able to watch it. Really I am thinking that I will definitely ask for a sedative. “I’ll be talking to you the whole time, and there will be music playing…” Music? I try to imagine what they might choose: Mozart? The Clash? Kanye? Work it, make it, do it, makes us harder, better, faster, stronger...N-n-now that that don't kill me, will only make me stronger. Uh-huh. She continued, “But even so, sometimes people have a hard time with it, since it’s done in an operating room, and it’s all a little strange.” A little strange? What hasn’t been strange about this whole experience? Every now and then, when I catch a glimpse of my partially-reconstructed, scarred breast in the mirror, and I feel, in my inner sanctum, the intensity of my loss, I am at once repelled by and joined together with the utter strangeness of it all--my new girl, this strange new world. But as I venture forth, my familiarity with this world--full of fear and hope--diminishes the outlandish nature of whatever might come next. And I must remember: I will be grateful for the fact that my labia folds will be left alone, thank you. Because there’s strange, and then there’s really strange. Ya.

My new nipple will not match my old one in projection; six years of nursing babies and toddlers makes that nearly impossible. But it is no matter. Symmetry, as we know, is overrated. I am excited to get my new nipple, to persist (else desist!) on this road of recovery and reconstruction, even if that symmetry continues to elude me. It's funny--I put on a bathing suit the other day and stood in front of the mirror, scrutinizing my chest, and it seemed as if my right nipple was positively bounding out of the fabric, yodeling Here I am! Look at me!, while my nippleless left breast was, by contrast, retreating into my chest, Don't mind me, please, I'm not quite done yet. And if I looked carefully enough, I could see the outline of my scar cutting across at a diagonal. I had to laugh--I don’t think I ever gave my chest a second look before all this surgery, and wouldn't have cared if one nipple was predominant over the other. Silly, silly!

Nipple culture is interesting. Everyone has their own nipple hang-ups and preferences, I’ve learned. My friend Clinton was musing with me about how some people go to great lengths to try to disguise their more “prominent” nipples while others don’t seem to care a bit how intrusive and perky theirs are. Nipple prominence aside, just the thought of nipple piercing is enough to make some people shudder, while others gladly enter into the arena of slaking a decorative pin through one of the more sensitive spots on the human body. Need a place to put Grandma’s brooch? Why not through the nipple! Ouch!

Evolutionary speaking, nipples and the surrounding hyper-pigmented areola have played a huge part in the advancement of the human race! Ever wondered how newborn babies can find their mother’s nipple on their own? It’s called the Breast Crawl, and it’s utterly amazing. Given enough time, babies will make their way, by using a combination of sensory skills and perceptions, to their mother’s nipple and latch on by themselves, signaling when they wish to start feeding. Most mammals do it, of course. And there’s a very good reason for it: survival.

The areola serves as a kind of target for the newborn, who sees best in contrasting patterns, hence, the hyper-pigmented, darker color of the nipple and areola than the rest of the breast. Eye candy, indeed!

At the end of my appointment, Dr. Pitts and I talked briefly about waiting another two months after my nipple procedure for my eye candy, when the pinkish color of the nipple and areola are tattooed on during an office visit. We joked about my request for a lizard tattoo at my first consultation with her. And then, she released me, reminding me to go into full flight gradually, bit by bit, so as to not damage my wings.

When I returned home, there was a message on our machine from my dermatologist's office. All the moles biopsied were benign. Instantly, I felt a sudden shift inside, a release of pent up dread, and a new lightness underfoot. YES! Fist pump, two arm salute. I'm golden.

Today, just a couple of hours ago, I tried out my new wings at the local pool, where I entered the cool water and felt, for the first time this summer, the refreshment of a late afternoon dip. I slowly pushed off and made my way down to the deep end. My stroke of choice? Why, breast stroke of course! Though it felt strange (what else?) at first, fish flapping across my chest with each pull through the water, it felt good to be back in the water. Ten laps later, I had aired out my wings and lungs and was ready to wrap myself up in a towel. I realized I still don't feel confident about my changed body, this work in progress. I feel unfinished, incomplete. There is work to do.

Tomorrow, perhaps I'll play some tennis with Luke, who has been asking day in day out if I can play with him. Perhaps my fish will flap a little less, and learn to swim with me. Perhaps, one day, I won't notice it at all.

Do not go where the path may lead, go instead where there is no path and leave a trail. ~ Ralph Waldo Emerson

Tuesday, July 8, 2008

Getting the Funk out

I haven’t written in a while. It seems I haven’t had anything cohesive to say, just bits and bones here and there. I’ve been feeling a little emptied, spent, wrung out, done. I didn't anticipate this funk, this stark bummer of blues and blahs that has been sinking my ship since my last surgery, to stick around for so long. I suppose I've misplaced my good cheer for the time being, and shouldn't worry about it, but this mound of frustration has been building for a while, and it seems that I'll have to take pitchfork to it at some point and pare it down to a manageable size, else the sharks will start circling soon.

I've been working on writing up our end of year homeschool progress report for our local school district, and it's been a difficult task, bringing up a real sense of loss and sadness around this past year. It's not that the boys didn't work hard, because they did, or that we didn't get enough done, because we did, but rather, the painful realization that for much of these past six months, I have not been at my best, and that I have failed, in many ways, my children and myself. And for all the things we didn't get to, for all the distractions we had to deal with, and for all the times that I wasn't able to follow through on a project or plan or lesson because I was wrapped tight in a cloak of fear, away behind closed doors at another doctor's appointment, or simply, too wiped out to find the energy to do the kind of job that I would feel good about, I have shed tears of disappointment and regret for all that this year wasn't.

And yet, it is over and done with, this year of plenty and pain. And it has been a useful exercise to write it up and send it off, a process of coming to terms with and accepting the year for all its missing pieces and broken promises, and letting it go...

I've been trying to re-establish some rituals in my little life, those rhythms of daily living that infuse my time with a surety and an enjoyment, and that offer protection from being gobbled up by everyone else's rituals. Getting outside first thing in the morning, to pick blueberries or raspberries, feel the sun on my face, and listen to the birds start to air out their lungs and wings in water and sky grounds me in the rhythms and comforts of the natural world as it unfolds around me and insists on nothing (though, of course, if I don't keep up with the raspberries, they grow moldy and infect the whole crop, but truly, I don't think the bees or Japanese beetles mind at all). In the afternoon, I check in with the vegetable garden in the afternoon, to weed, pick or simply enjoy the tidy rows of plants that strain with new growth and sun-fueled vigor. My nightly PT exercises, done in the moon beams cast by my blue light just before bedtime, have helped ease the pain in my hips and lower back enormously. At weekly acupuncture treatments, I've become familiar with the initial release at the needle's tip, the sudden flow of emotion and energy through blood and body, and the final, calming waves washing over me as I slip ever-deeply through layers of sediment into the pathways of my soul.

There are plenty of things I'd like to add to my daily and weekly rituals: artist dates, when I can get out and see the world through the lens of inspired creative expression, time set aside each morning to write a few pages to drain this addled brain, and each afternoon to head outdoors for some mind-clearing walks. Otherwise, I’ll continue to blather on about the incessant heat, and how it sucks the marrow from the bone not to be able to swim and cool off my soggy noodle of a self.

As you can see, I’ve been feeling the Tamoxifen. Earlier this week, my internal heat, raging like a wildfire, combined with the external hot and stickiness and made me sweat and swell and wonder whither a cold front with some crisp Arctic air might sweep down from O, Canada and render me lifelike again. And at night, no matter the temperature, or how many fans I have blasting in my bedroom, I awake often, bathed in sweat, throwing off covers, wondering when the spell might break. Five years? Five f-ing years of this? Ok, ok, if I consider the alternative, I can deal with hot flashes. But I am starting to see my future: five years of Tamoxifen-fueled hot flashes ushering me into Perimenopausal-Land, where the hot flashes will only intensify, and continue for who knows how many more years. And yes, for those of you keeping score, I am complaining. Bitch, bitch, moan, moan.

My sleep-deprived brain has grown a bit foggy (which I just wrote as goffy). Last night, as I sizzled up some rice and beans for make-your-own burritos, I stood there, captivated by the way the black beans, plump and dry, skittered across the pan like blood-drunk ticks. See? I blather on. I might not be hallucinating anymore, but something is going on inside this trash-talking head of mine.

I’ve been doing so much weeding that when I close my eyes, all I see are spirals of crabgrass, and I grab for the splayed center, gripping the entanglement of reddish-tinged green legs and arms, give it a wiggle, and heave ho, ripping out roots that seem to clench and grip the soil with the stubbornness of a two year old. As soon as one disappears, another takes its place. Crabgrass and crows are going to take over the world, mark my words.

We’ve had some achingly beautiful stormy skies this summer, awash with haunting colors and sinister-looking thunder heads that seem to build every afternoon in an anvil clash of rising heat and cooler, condensed air. One such afternoon, I was running out to my car just as a thunderstorm started to blunder the blue sky, when a flash of lightning struck somewhere close behind me, so close that I jumped as the end-sizzle zzzzzzzz ripped through my ears and made me laugh with the irony of being struck by lightning after fighting my recent battles. But that’s life, isn’t it? We live our days never really knowing when our time is up, and in the face of that mysterious interplay of fate and free will, we try to control what we can, fighting those battles to secure more days for ourselves, days replete with, we hope, living in our own full bloom. And however long the bloom may last, if we don’t at least try to cultivate a life of passion, we risk losing everything—all the colors and flavors and sounds that imbue our time here on earth with its unique richness—to an impaling fear and dread that dulls the colors and mutes the music and makes it hard to find any true enjoyment…

It is better to wear out than to rust out. ~ Richard Cumberland

Lightning strikes aside, this sense of urgency, that life is short so I’d better start living it on my own terms, has been on my mind a lot lately. I saw my dermatologist a week ago for a bi-annual skin check, and she did her usual thing: removed three moles for biopsy, told me to come back in another six months, and to keep an eye on things. I’ve had moles removed before—many, in fact—but this time it was all different. Perhaps because family members have had melanomas excised this summer (all small, but scary), or because my experience with breast cancer has forever left me with the knowledge that shit does happen, often when you least expect it, waiting for these pathology reports has weighed heavily on me. I'd rather not have to worry about every little damn test. I'd much prefer being able to go back to my pre-cancer oblivion, when I had no reason to suspect anything less than stellar results, and I didn't give it a second thought. But I can't. I am forever altered by my experience, and for now, those demons of dread skitter just under my skin. Whatever the test--a Pap smear, a mammogram or breast MRI, or mole biopsy--I'll never take a good test result for granted again. No longer will I shrug off a "negative" result (which, of course is always a good, positive thing); now, only an emphatic YES! with a fist pump and two arm salute will do.

I have tried to get to know my moles—the small, perfectly round, dark brown ones that dot my arms and legs, the bee-hive on my right hand, the one that seems nearly black against the pale skin of my belly. Getting to know your moles is a lot like getting to know your breasts. If you don’t get to know them, you won’t be able to notice and decipher any changes that might occur, and this, as we should all know, is critical to early self-detection, early treatment, and securing more days for ourselves…to watch the changing fall foliage, bomb down the ski trail, and savor the next strawberry season.

My father’s father died of melanoma that metastasized to his lungs when he was just 63 years old. He was a lifelong sailor, and probably never once put sunscreen on his skin, or gave a thought to what all those unprotected hours in the sun might have been doing. And yet, there are zillions of people who spend their lives in the sun who never develop skin cancer of any kind, so clearly, there’s something else to it. And as the sun only gets stronger, more and more research comes out about the dangers of not getting enough of the sun’s vitamin D3—something that the sun has provided forever and ever, and that may just hold more importance than we had thought.

Most days, I feel caught in a holding tank, between needing more vitamin D from the sun and having to watch my sun exposure. Last fall, after spending a week away at one of our favorite get away spots on Campobello Island in New Brunswick, returning home feeling depleted and scurrilously sleep-deprived, I visited my doctor for a battery of blood tests, and discovered that I was severely vitamin-D deficient. That it should happen at the end of summer was bizarre. Most northerners are plenty vitamin D deficient by January or February, when their summer stores fade and they’re not able to recharge through the withering winter sun. But September? I started taking vitamin D supplements, and paid more attention to getting outside in the middle of the day for some unprotected sun-worshipping, which translated meant 15 minutes outside, with arms, hands, and face fully exposed to the waning northern sun. By February, my breast cancer diagnosis had forever rocked my world, and I started to look for answers. The only red flag for me was my vitamin D deficiency, which has been linked to higher breast cancer rates and higher rates of mortality. So, I strive for the elusive balance: get enough sunshine to store up on plenty of vitamin D for the winter but not enough to increase my risk for melanoma. It seems an impossible task. There are some good resources out there. The Vitamin D Council has an excellent web site that explains how our bodies synthesize vitamin D from the sun, and all the ways that our good health depends on getting enough of the sunshine vitamin. It also discusses in great depth how adequate vitamin D levels are linked to the preventation of many major illnesses, including cancer:

There are, of course, other things I can do, others things we can all do. Drink lots of green tea and pomegranate juice, eat lots of tomatoes, and indulge in a little bit of vitamin DC (dark chocolate) every day to protect our skin from sun damage. Aside from including naturally-occurring sunscreens in our diet, we can get outside for at least 20 minutes a day, using mineral based sunscreens when possible and avoiding the mutagens, disguised as the dermatologist-recommended chemicals in most sunscreens. Enjoy the summer sun at the start and end of the day, and a siesta inside after lunch. Live life and stop worrying about it so much. Crikey!

For me, it’s been all about getting out of my head, where I spend most of my time. It’s been about trusting myself, and taking chances; trusting the universe, and putting myself out there; shedding the anxiety, the perfectly reasonable excuses no to, and taking those leaps, regardless of what’s holding me back or telling me not to. And it's about leaving behind the paralyzing fear and riding the back of the elephant right out of the room. I'd like to return to my earliest pursuits--singing and dancing, hunting for salamanders, and imagining stories to quell my fears and stoke my fire.

If we listened to our intellect, we'd never have a love affair. We'd never have a friendship. We'd never go into business, because we'd be too cynical. Well, that's nonsense. You've got to jump off cliffs all the time and build your wings on the way down. ~ Ray Bradbury

I try not to wait, and yet, it's always there and won't leave me alone. But in the meantime, I am sizing up the cliffs, pondering growing some new wings, and contemplating a different life. There are things to look forward to: a new nipple in August, family gatherings, finally being able to swim again, ride my bike, play tennis, dance my ass off, and give this girl a proper coming out party. Endurance has been fueled by being able to find the little delights in each and every day: the kilt-clad beefy competitor at last month’s Highland Games, who made me smile with his red sneakers and tight green Rondo jersey; the way the blueberries bronze in the sun in clustered hues of different reds and blues; watching our resident stoner, the cat, lustily eat the catnip on the porch, wind her way inside to satisfy her munchies, and then sleep off her binge; watching a blaze and bang of fireworks with extended family on the Marblehead rocks; communing with women friends about all the collective female wisdom and experience that binds us together; finding bits of community here and there, feeling the comfort of familiarity, the rush of connectedness, and the power of the ever-expanding circle; the splash of sun and the dance of shadows across the canvas of sky and trees; the roar of the late afternoon thunderstorm; the lushness of light and color inside and out. If this funk is to fade, I'll need to somehow find the energy to keep tending my many gardens, and the courage to excise the things that quite simply need to go. Grab those tendrils, give them a little shake, and heave-ho.

“One day you finally knew what you had to do, and began, though the voices around you kept shouting their bad advice….But little by little, as you left their voices behind…There was a new voice, which you slowly recognized as your own, that kept you company as you strode deeper and deeper into the world, determined to do the only thing you could do -- determined to save the only life you could save..” ~ Mary Oliver

Tuesday, July 1, 2008

Be kind, for everyone you meet is fighting a hard battle. ~ Plato

Life’s an unsolved mystery. Those who solve it, don’t talk about it. Those who don’t, talk a lot. ~ Yogi tea bag


It seems that everywhere we turn these days someone’s trying to give us free advice—the Tarot card lady on the corner, the stranger in the coffee shop, the pushy librarian, the whacked out drunk walking the street, shouting obscenities. In addition to all the unwelcome advances on your better sense, Life seems peppered with those little daily affirmations of wisdom, good judgment and no-brainers—Share your strengths, not your weaknesses (duh!)—on tea bags, bottle caps, fortune cookies, calendar pages, and other sundries of everyday ware that are somehow supposed to extend meaning and purpose into our most mundane moments. So heavily salted we are with these ceaseless sprinkles of therapy that we may not think to call on our mothers, sisters, or best girl friends—Joni Mitchell songs included—for that much-needed chat, guided imaging, or righteous attitude adjustment, when really, truly, we should, especially when the chips are down, and your morning tea-therapy session, that leaves you with To succeed, consult three old people just isn’t cutting it. The vicissitudes of daily life notwithstanding, there are times, when something truly nasty hits and there seems to be no way out, when only the very best will do, and these are the times when we gather together our friends and family and steel ourselves against the most destructive of storms. But there’s another course, too: to stay open to the possibility that sometimes help arrives from the most unexpected places.

When I was hit, slammed, catapulted (and I’m still waiting to land) by my breast cancer diagnosis, I did the only thing I could: I reached out and asked for help, grabbing my heart and thrusting it out for anyone who would listen to the beat and thump of my absolute terror. The response was immediate, and overwhelming. Old friends and new, kith and kin, appeared to help me on my journey, steering the ship, scrubbing the barnacles off the rudder, fighting the scurvy pirates, swabbing the decks, manning the galley, and summoning wind and fair weather for smooth passage. I was caught off-guard, humbled, thankful. Knowing that I would need all the help that was offered, I took it in, with open arms, readied my sails, and gathered together their strength, my strength.

It’s the call of Ubuntu: to recognize that I am what I am because of who we all are, to understand my place in this circling, cycling web of humanity, and experience the collective warmth within. Those Celtic jumping-hug circles aside, Ubuntu speaks to all of us. As the Archbishop Desmond Tutu explained it, “A person with Ubuntu is open and available to others, affirming of others, does not feel threatened that others are able and good, for he or she has a proper self-assurance that comes from knowing that he or she belongs in a greater whole and is diminished when others are humiliated or diminished, when others are tortured or oppressed.” No superstars, no heroes, just everyday folk living in concert with the greater community and natural environment, recognizing their place in the global web and the strength in the interconnectedness of all living things, a pulsating spiral of concentric circles.

During these last six months, my circles have widened, as I have relied on so many people for so many things—from helping me find the team of doctors who would ultimately rid my body of cancer, reconstruct my breast, and oversee my treatment and recovery for the foreseeable future, to sending words of encouragement that have arrived at just the right time, when my optimism has been floundering in choppy seas, and from someone, somewhere in the thick fog a landline appears, or taking the time to visit, share a hug, bring a meal, and fill my sails with loft and flight. And I’ve come to depend on being able to tell my story, to process all the psychic turbulence and mental mayhem, and let it go. I’ve been incredibly moved by the response I’ve received from those who, in reading my blog, have given me something that has made all the difference in the world to my ability to make it through these grim, unsettled days: a compassionate ear, a word of encouragement, a ray of hope, a tether. And many, too, have listened and loaned me their own stories in return, an exchange of experience, a gift of wisdom, and a blending of voices that has seasoned this journey with civility and compassion, illuminating and enlightening the darkest recesses of this voyage of soul, and vanquishing the acute loneliness and resolute fear that often fester below the decks.

We learn best to listen to our own voices if we are listening at the same time to other women—whose stories, for all our differences, turn out to be our stories also.~ Barbara Denning

True gifts of the heart, these stories have come from all sorts of people, and they have brought me to tears and opened my heart to joy. I owe the wonderful quote above to my old dorm head from Exeter days, Susan Herney, whose support this spring has served as a potent reminder that an immediate benefit to reaching out has been hearing back from men and women who have graced many different chapters and pages in my life—beloved Exeter friends, teachers, and classmates who have carried me and amazed me since I was just a girl of fourteen, my bawdy rugby compatriots from Williams days, who continue to slay me with their warmth and humor, dear friends who have crept lovingly into my life and stayed, filling the hollows with generous comfort and love, and family members who have proven, again and again, that “the family is indeed a haven in a heartless world.”

Many of the women I have heard from have experienced breast cancer in ways that have touched their lives irrevocably and moved them to renegotiate their life paths. Wherever they are in their journey—whether they’ve just received the sting of the diagnosis, and are wondering just how far into the depths of despair their passage will take them; had multiple lumpectomies without clear margins, and are now facing losing one or both breasts; endured any horrific combination of lumpectomy, mastectomy, reconstruction, radiation, chemotherapy, hormone therapy, ovarian ablation, and are now trying to find the lightness of peace of mind in their day to day; or done battle with the breast cancer beast and lived to tell their tale—these women are true warriors, having had to summon that tenacity and valor to drive the cancer away, and share their tales, heavy with triumphs and travails, sage understanding and a bold return to life.

Strangers or not, as we reach out to each other, sharing fortitude, perspective, insight, our voices blending in melodious chords of euphonic rage and joy, the circle expands, a gathering of women tethered by, quite simply, the common thread of cancer. In and from these women, I have witnessed amazing strength, courage, and grace, learned when to buck up and fight and when to surrender, take flight, or go turtle-slow, and discovered my own warrior girl within, who has taken my hand and led me stoically through this grim channel. I have taken much comfort from this collective sisterhood, and because of it, am on my way to regaining trust in this universe and, for all that, and for all of you, I am exceedingly, eternally grateful.

So many women out there of all ages have had to do battle with breast cancer, and it may be that because I myself am trying to navigate this labyrinth with its unexpected twists and turns, I am hearing of more and more women who are somehow assimilating breast cancer and all its distractions into their lives, while brandishing their warrior girls to face their diagnoses with brave hearts and open minds, and kick ass. Both women and men have written to me with their own stories, sharing the wisdom of experience, and what they’ve, and the people close to them—mothers, sisters, daughters, friends—have learned along the way. They’ve written to offer support and encouragement, send love, deliver that all-too-critical Juju, and surround me with good wishes. They’ve handed off not just wisdom but courage and strength and grace and beauty, too, and were it not for them, I know that I would not have been able to greet this morning with a thought for tomorrow.

Wisdom becomes knowledge when it becomes your personal experience. ~ Yogi Bhajan

I have been heartened by stories of friends’ mothers who have braved and defeated their breast cancer, and now ten, twenty, thirty years out are still going strong. I have heard from friends whose mothers and mothers-in-law celebrated thirty plus years as breast cancer survivors, only to have it return in a more aggressive form, knock them off their feet, and accompany them out of this life into the great gulf of the unknown. It is tough hearing those stories, bringing up anxiety about whether my cancer will return, and making me hope that I have at least another thirty years of happy, healthy living to shout about by the time all is said and done. My own grandmother, my mother’s mother, enjoyed another thirty plus years of world traveling, motorcycle riding, partying, and howling at the moon after her first waltz with breast cancer, living gracefully with an unreconstructed breast (and a much joked-about blow-up bra) for many, many good years, until she reached her early 80’s, when the breast cancer returned to annoy, but never overcome. She never did let it beat her, and I have been bolstered by the unflappable strength and feisty spirit she passed on to all of us when she died a little over nine years ago. As well, I have been uplifted by strangers who have written to offer whatever I might need to get through, and I have been humbled by the opportunity to return the gift. These are stories that have become a part of me and will stay with me forever.

I have been struck with not only how many women I know of who have had to deal with breast cancer, but how young so many seem to be. My friend Lisa, just 40, had just had her first mammogram ever when she was told that there might be a problem. After retakes confirmed the ominous presence of suspicious tissue, she had the first of four lumpectomies, none of which would return clear margins. Lisa had a double mastectomy with reconstruction just a few weeks ago. She is doing well, her spirits lifting each day, but it has been a struggle. Her journey—infused with the love and support of her close family and good friends, her perennial optimism, her overflowing warmth and love of life—has left a blazing trail that I’ve been able to follow.

That very first morning I ran into Lisa and her family—her daughter, mother, and boyfriend—in pre-op, as I was heading in for my biopsy/lumpectomy, and she for her second lumpectomy, she handed off her courage to me. Take this, she said, with a hug, and I held it close, unsure of when I might need it. Minutes later, changing into the anonymity of the standard issue hospital wear and id bracelets, I was suddenly aware that I was alone, and I could feel the anxiety rising up and clamping down on my breath, and I thought of L. and her family just two curtains away, and I drew on their show of support as the nurses came in to take me downstairs. I drew on the lingering warmth of Lisa’s embrace as I gutted out the sinister needle localization procedure and wished I had a hand to hold as I sat through being squeezed into mammography equipment, blood spurting from my breast as the radiologist withdrew the needle that had tagged the area of suspicious tissue for removal. I drew on the face of Lisa’s courage as I returned to pre-op to wait out the stretch of long minutes alone, for the numbing, descending drip of twilight that would render me useless during much of the biopsy, before wearing off and eliciting an urgent call to “Give her more, give her more!” And I drew on Lisa’s kindness as I came to in post-op, felt the end rush of twilight wash over me, and saw her face come around the corner to wish me well before she herself went home to recover, and my mother came to pick me up and take me home, where I would begin the long, insidious wait for answers.

Sometimes, we hear terrible things about people and don’t know how to respond. Cancer is one of those terrible things. Sometimes it comes up in conversation—Oh, I had breast cancer this past winter. I’m doing okay now—and you don’t know what to say, because it’s not just a passing flu, after all. Even after the cancer has been cut out, any remaining cancer cells irradiated, or blasted by apoptosis, the grim task of chemotherapy and hormone therapy, it’s still there—the heaviness of doubt and depression amidst a longing for traveling light and unencumbered, the feeling that you’ve quite lost your footing and are not sure how to get it back, the sense of loss amidst experience and wisdom gained, fragility in the face of uncommon strength, and uncertainty against a canvas of a budding, creative life force. Cancer casts a long shadow that does not go away, and changes you forever.

There’s a woman I know who was first diagnosed with breast cancer in her left breast at the age of 28. 28! Can you imagine? She had a lumpectomy with radiation, and set about living her life. Just a year or so ago, as she reached that pinnacle of mid-life, with a lovely teenage daughter, a loving husband, and her own successful business, the cancer returned. I saw Penny for a facial just a few weeks before she was due to head in for her double mastectomy. She had already had the chemo and lost her hair, which she then covered with a wig. No matter how anxious she was on the inside, she exuded confidence and calm on the outside, talking about her upcoming surgery as if she was going in to get a new car. I was amazed, and terrified for her, and suddenly, for me. This was a woman who was young, beautiful, athletic, the very picture of health. It was the first time I felt that stab of fear, filling my lungs with a disquieting apprehension that nearly took my breath away: if she got cancer, that meant I could too. It wasn’t something I wanted to think about.

When I received the news of my diagnosis, I scheduled another facial with Penny, and was pleased to see how well she was doing. Her hair was growing back in beautiful curls, her strength was back, and she seemed in good spirits. But her optimism was tempered, by a persistent fatigue, and by the haunting memories of having to watch the slow drip of the chemotherapy drugs entering and poisoning her body. It was good to talk to her that day, and feel her fighting spirit, palpable and dynamic. Later, she and her daughter would drop off an incredibly helpful how-to-get-through-it book that I have used over and over again, and some head scarves that I have somehow managed to avoid needing.

Yes, somehow, I did escape the dreaded chemo and all the expected fallout: losing my hair, needing to wear a wig or scarf, waiting for the curls to grow back in, dealing with ovaries that were being shut down prematurely, the flush of the hot flash, the suddenness of the change. But I was ready. My friend Karen offered to come with me when I needed to get my new warrior girl haircut (which she has, and which I had for many years). My mother told me about great wig shops that would consider your hair before you lost it in order to create a more compelling match. And my father’s sister, my sweet Aunt Kit, who quite amazingly is the longest known survivor of brain cancer EVER, saved a “colorful cover-up kerchief” for me, just in case. Kit’s story, having survived not one but TWO brain tumors at a very tender age, losing her hair to the radiation therapy, and being forced to endure the endless taunts of classmates, is remarkable, and demonstrates the human spirit in a way that has moved me to tears to try to imagine what she had to go through. She writes that the “very worst part of my baldness after getting radiation therapy for the brain tumor was having to go to a new school in New York at age 12. The teacher told me to go to the coatroom and leave my hat! And all I could say was “But, B…but.” She made me sit at a table for the shortest boys...and I was the tallest girl.” Kit’s mother (and my grandmother), whom we affectionately called Tootsie, had embroidered the wonderful stick figures she was known for on the hat, but Kit never wore it to school again. She switched instead to a kerchief, which only “enticed the nasties to try to pull it off to see the scar! I have to say the teacher made me her teacher’s once she found out who I was…and I thought it was because I was the only one whose father was overseas!”

There’s something especially difficult about the notion of children having to face the terrors of cancer, chronic illness, or the endless rounds of treatment or surgery. A friend from high school has a daughter who has been through three rounds of eyelid surgery in an attempt to maintain her vision and later on, “keep the finger-pointing and prejudice about her appearance at bay. Like the Los Angeles plastic surgery devotees who get a little work done on a regular basis,” she’ll need work done here and there as part of the ongoing process to keep her healthy and happy. My friend talks about her daughter’s “towering good-nature” and I cannot help but think of those young children who have known of nothing else than the endless parade of doctor’s visits, surgeries and treatments and still, their light shines through on all of us.

I have good friends from college who have gone through the unthinkable: losing a child to cancer. I’m not sure how they quite managed it all, but they did, and left us all in awe of their insurmountable love, and astonishing resilience and grit. Little Henry would be Dominick’s age now. I’ve thought of him—and his parents—quite often. And I’ve wondered how it was for him, to greet each day with a smile, and for them, to scoop him in their arms, cast off their fury and sorrow, and simply be with him in all his light and love.

I suppose we do what we have to do. Losing a child at any age must be the most savage, excruciating experience a parent can endure. My step mother Martha lost her sister, Patty, to breast cancer. Patty was young, and it was a devastating blow to her family and friends. Several years later, when Martha was faced with the discovery of pre-cancerous tissue in one of her breasts, she did what she had to do: she made the decision to have a double mastectomy, and gave herself the gift of peace of mind. Martha has been a constant source of support for me these past few months; it was particularly helpful to hear what to expect post-mastectomy and beyond, to hear all those little things that the docs leave out. Right before my mastectomy, Martha sent me a beautiful e-mail, her words radiant with the light of the wisdom that she was now passing on to me. Hearing her speak of the absolute trust she put into the surgery made a huge difference in how I entered pre-op, leaving behind the frenetic anxiety, and adopting, instead, the calming conviction that everything would be alright. Breathe and you shall receive. I had to trust all that good Juju coming my way. Martha writes: “For me, it was the peace of letting go and letting be; a sense of trust and relief that the long anticipated next leg of the journey had finally begun, and healing was now in my own hands.” She adds a quote from the poet Seamus Heaney:

Omnipresent, imperturbable
Is the life that death springs from.
And there is no complaint, no complaint at all,
Now that the rye grass waves beside the ruins.

She adds, “It is my guidance when I think I am at the center of a storm. I am reminded that re-birth is always available to me. Life insists on itself.” Indeed.

My dear friend Kate sent me a t-shirt a few days after my mastectomy. Long-sleeved, soft and cottony, it was a shirt I wanted to put on right away, and one I would wear throughout this past spring whenever I needed an extra boost of confidence: giving a speech at my Exeter reunion in front of my class, heading in for my first fill-up at the plastic-surgeon’s office, going in to hear the final pathology report from the oncologist. Emblazoned on the chest are three little words that have meant nearly as much to me as those other three little words that one hears now and again: One Brave Chick. This, from Henry’s mother. Brave Chicks, it seems, abound.

And so, we pass the torch. I wrote last week about an old rugby friend, Emmy, who had successfully battled colon cancer after a colonoscopy diagnosed what had been minor stomach symptoms. I have many friends who are themselves or have partners or parents in the throes of their own crusades against cancer, and I hear the all too familiar beat and thump of terror, the crushing dread and prickly anticipation. I hear too the call to arms, the rush of spirit transcending the pressing hollows of fear and fighting onward. And sadly, I have friends whose parents have lost their battles, and I know that the depth of their sorrow and loss must be, at times, insurmountable. But there are many more that are on the other side, easing their battle-weary bodies and souls into the tentative triumph of recovery.

At my Exeter reunion this past spring, I happily reconnected with my old English teacher Peter Greer, who has been living determinedly with his own cancer. In a recent email, he captures the joys of his recovery in a way that offers something to all of us, a reminder of the wondrous flush and rapture of living not within or without but here and now:

“And, as for recovery, here's what I have found: As I have felt better and better, I have found it harder and harder to stay in bed much after daybreak, ever more eager to get started on a new day thick with options and possibilities. With all the daylight we now have, that means I sleep less than I might like, but I live an expanded present, it seems, and, to quote myself in shameless fashion, it is the only present I'll ever have, the only present any of us who aren't time-travelers will ever have. And I love it.”

Rejoice in the things that are present; all else is beyond thee. ~Montaigne

Burn bright, bright light, lest the past snuffs your fire. Let the present coax your flame, warm your soul, and set your day ablaze with color. Go, live!