Sunday, October 30, 2011

Hey, You, Get Off 'A My Cloud

Some people have gently or not-so-gently suggested I change the name of this blog.  Afterall, am I not out of Cancerland?  And isn’t it somehow morbid?  The world of IV infusions, radiation beams, nausea, a life scheduled and shaped around treatment – isn’t that almost a year in the past now? 

What they don’t understand is that Cancerland isn’t the 9th floor of Beth Israel Hospital.  Cancerland isn’t populated with infusion nurses, oncologists, social workers, and support groups.  Cancerland is populated by ghosts.  Cancerland is an inner landscape.  It’s windswept and cold.  Its weather is unpredictable, like autumn weather in Alaska, one low pressure center of fear following another, with brief periods of calm between.  Cancerland lies along the seismically active Pacific Rim of Fire, with sudden tremors and frequent eruptions of anger.  It’s a place where, even if aberrant cells no longer proliferate, aberrant thoughts and emotions do.  Cancerland feels sometimes like a Superfund site, contaminated, leaking barrels of toxins rusting on the tundra.  And of course, I want out.  I want a Caribbean island.

I’m a few days away from turning in the first draft of my book to my publisher.  I got the contract to write the book while I was undergoing chemotherapy treatment, in the throes of the Red Devil.  
For some crazy reason, I told my editor that I could finish the book in a year, even though several months of that year, I was still undergoing treatment.  Part of it was the way a cancer diagnosis, regardless of prognosis, clarifies one’s priorities with the force of a huge wave of frigid North Pacific saltwater to the face.  I knew this book was something that I had to finish.  What does such conviction mean?  It doesn't help that I'm superstitious.  Cancerland is a highly superstitious place.  Cancerland is this:  a deep, crazy, irrational fear arising from underground, often at 3:30 am – unstated until now – that as soon as I send the manuscript off, my life’s purpose will be over, and cancer will return, and I'll die.  That agreeing to one year as the rather unrealistic timeline for finishing a book about two decades of my life following orcas was because of some deep knowing.   A fucking premonition.  That kind of "thinking," right there, is Cancerland.

Cancerland is also adding my social worker’s daily blog called “Living with Breast Cancer” to my “Favorites” bar, when often, reading the entries taints my day.  Not because it isn’t valuable stuff, compassionate, smart, up-to-date.  The social worker is a breast cancer survivor – she had it twice – and she facilitates support groups and counsels people in and out of treatment, people surviving and dying and scared.  She’s awesome, and beautiful, a force.  She’s a pragmatist.  She knows breast cancer isn’t pink in any way:  not feminine, not gentle, not benign.  Breast cancer doesn’t wear nipple-pink, baby-cheek pink, but black – black nail polish, black lipstick, black leather.  Breast cancer has safety pins in its eyebrows and lips.  Breast cancer is a sociopath.  It has hollows under its eyes, and it listens to hard-core thrasher music and watches dark, violent movies.  The social worker's posts are often sobering.  No cure, no certainty, no pink fog to calm the nerves.  If only I had a bar for ‘Least Favorites” on my browser screen.  When I’d click on the button, I’d get an “access denied” message.  Because the Least Favorite of all is the part of myself who daily checks to see what’s new in Cancerland.  A cure?  A vaccine?  A new, preventative concoction, perhaps a flax seed-aspirin-coffee-red wine smoothie.

If Cancerland’s primary weather is fear, its geology is rage.  That one’s life is now infected by morbid thoughts, and toxic language like "five year disease-free survival” and “risk of recurrence” and “osteoporosis” and “mastectomy,” and “arimidex” and “see you in six months.”  You want to take a scalpel and extract that icky thread of language that’s insinuated itself into your inner landscape.  It’s like someone else’s hair in your soup.  You want it out, but even after you get it out, do you still want to eat that soup?  Your favorite soup, which was your oblivious, pre-breast cancer life.  Oh how good it looks, that island, as seen from afar, from the shore of this new one, CancerIsland.  Welcome, indeed.

 “Put it behind you,” is the message beneath people’s questioning of my blog post’s title.  If only I could.  I know the point is not to remain on any one island, Pre, Present or PostCancerIsland, but to clean and then weave that unasked-for, reviled thread into the mosaic of a whole, evolving life.   On my better days, in the calms between storms, I live that process.  It’s what most of my blog posts are about.  But some days, like this one, with 17,000 words still to cut from my manuscript, and an Arimidex-induced ringing in my ears, and a fog of fear rolling in from the west, and flashes of foot-stomping anger, I want to put on some music that sounds like razor blades and broken glass.  I want to put on my black books and leather.  I want to dye my hair magenta, stick a safety pin through my earlobe, and become my own weather, with hurricane force winds.  I want to meet that bitch, that cancer diva, and dance her off this planet, this island, this cloud.

Thursday, October 13, 2011

Thank You Tina Fey


Back in the radiology waiting room at the hospital in Boston for my six-month follow-up mammogram and ultrasound.  I just walked here in the pouring rain from the little inn on Beacon Street.  Out on the streets, I think I was the only person not carrying an umbrella.  Well, a guy on a bike wasn't carrying an umbrella, so I'm exaggerating a little.  But I felt a bit foolish.  Like showing up for an Alaska hippie sauna wearing a bathing suit.  In Alaska, carrying an umbrella, even in an autumn deluge, means you're a wimp.  (You cover yourself head-to-toe in rubberized rain gear and wear rubber boots instead).  My friend Kelly (not a wimp) lives in a town in Alaska where it rains almost 200 inches a year.  It's been his personal mission for decades to convince Cordovans that umbrellas are a great invention.  Years ago, he convinced me, so I do walk around in Homer in the rain carrying my umbrella, eliciting incredulous glances from drivers.  Last time I was in Cordova, in September, during a storm, I didn't see anyone carrying an umbrella.  Kelly, undefeated, showed off his extra-fancy unbreakable model that is stronger than a North Pacific gale.  I wish I had that umbrella today.

But this is what -- displacement behavior?  I'm clearly distracting myself.  This is me trying not to think too much ahead.  Wisely, I didn't buy a latte on my way up here this morning.  Because of course as soon as I stop thinking about Kelly and umbrellas and Cordova and rain, within me arises, just under my solar plexus, an inner fritzing, like a television screen in an electrical storm, aka, anxiety.

Next to me, a woman talks to her friend about how she's going to pay for cancer treatment.  Her friend reminds her to stay positive.  Another woman, fine new hair growing sparsely back on her bald head, texts someone after a consultation.  Getting up to go to the exit or one of the examining rooms, women grab fistulls of hard candy from a basket on the table.  Another kind of displacement behavior, maybe.  I see they got rid of the Lucky magazines.  Here we are in the waiting room, individual in our anti-anxiety drugs of choice:  paperback, Us magazine, cell phone, daily planner, New Yorker, arms crossed protectively over the breasts, and me:  tapping away on laptop.


Just got out of the mammogram room.  All those extra views because of a fibroadenoma, a benign nodule, in my left breast; it caused me a scare last time.  This time, I'm more prepared.  A very nice woman with a pink ribbon pin squished my breast between the machine's plates.  Hold your breath she said, as if I had a choice, while the machine whined and clicked and beeped.  She kept me chatting.  "We're here to reduce your anxiety," she said.  "Cancer hits good people in bad places," she said.  Actually, it's not like Santa, it doesn't care if you're bad or good, holy or profane, organic or chemically preserved.

A black woman who waited a very long time for her ultrasound grabs candy from the basket as she leaves.  We catch eyes, smile.  "Have a good day," she whispers.

White sneakers, shiny black rubber boots with yellow trim, running shoes with pink soles, two sets of clogs, my brown suede boots.  The current composition of the waiting room.  Individualized in this moment by our feet.  Our street selves.  Boots made for walking out this door, into the regular world of puddles and crosswalks, asphalt and cement and soggy fallen leaves.  On top, we're all the same in our johnnies.

The bald woman comes out of the ultrasound room, and a voice from behind the door trails after her:  "Good luck."


Called back for one more picture.  "Everything's okay, just need one more view," she says.  It's the same nice woman who did the first views.  Now things get really intense; I practically stand on tip-toes.  Breathing, neither notion nor option.  We chat some more, about the breast cancer walk she was in the other week, about Alaska.  And then I'm back out in the waiting room.  I realize the exit sign is pink.  I think about my clothes, none of them pink, damp form the rain, hanging in the skinny closet in the changing area.  Okay, now this is strange, unbelievable.  On the table beside me there's a New Yorker magazine open to page 65.  I scan down the columns, thinking, "Wouldn't it be cool to find one sentence that speaks to me right now, to this situation?  One sentence I could quote in the blog."  With the New Yorker, anything is possible.  And there it is, on that very page, 65, halfway down:

"And what's so great about work, anyway?  Work won't visit you when you're old.  Work won't drive you to the radiologist's for a mammogram and take you out afterward for soup."  I flip back to see who this is:  "Confessions of a Juggler" by Tina Fey.

Go figure.  I think about my sister.  A consummate juggler -- mother of three, doctor, volunteer, runner, yogi -- she rescheduled half a day of work today to drive to Boston for me.  She will be here mid-afternoon, in time for my oncology appointment.

Out of the "second view" room comes a woman, thirty-something, dark brown shoulder-length hair, jeans and clogs, and she sits down next to me.  I push the magazine toward her.  "Were you reading this?" I ask.

She says yes.  I say, "Did you see this paragraph?"  She picks it up, reads, laughs.

"Did you see who wrote it?" she asks me.

"Tina Fey," I say.

She resumes her reading, her waiting, every once in awhile even chuckling at something she reads.  I'm sure, in her regular life, she's a juggler too.  I saw her studying her daily planner earlier in the morning.

Thank you Tina Fey.


Now in the hospital restaurant drinking coffee and listening to bad pop music and loving it, loving every syrupy lyric and synthesized beat.  Is there anything more sweet than sweet relief?  Because the radiology doctor told me the fibroadenoma looks exactly the same as last time.  "Normal breast tissue," she said.  I don't need another mammogram for a year.  No more ultrasounds, unless there's some change.  Then she handed the wand to a trainee.  There were two trainees, actually, one from Harvard med school, one from the hospital program.  After the blur and exhaustion-fog of med school, what will they remember, those two?  Surely not the anonymous, relieved woman lying on the examining table, her boot-clad feet hanging off the edge, her one breast covered with gel.  Here's what I will remember:  Trainee 1, a head of intricate black braids, smooth brown skin, a look of eagerness on her face, taking the wand in her hand for the first time.  "Hold it like this, the other way," the doctor said.  Trainee 2, strawberry blonde tight curls, brown eyes, pale freckled skin -- she looks 12 or so -- staring confidently at the computer screen.  And the woman doctor, white coat, mannish gray short hair, stocky voice and frame, motherly, instructing them:  "Relax your wrist, stand up straight."  Off to the side, the true expert, the dark-haired Helena, technician, catching my eye, giving me a wink.  "You are still here," she seemed to say with that look.   "You haven't disappeared."

After I walked out of the ultrasound room, clutching my johnny over my chest, I saw the dark-haired woman, still waiting for some other test.  Done with Tina Fey, she just sat there, her eyes closed.  "Take care," I said.

She looked up, startled.  Smiled.  "You too," she said.

In the waiting room, with eyes and mouths and gestures, we speak a language under the language we speak on the street.

And in the hospital restaurant, another pop tune plays, a remake of "You're so vain."  I sip my coffee.  I'm so unreasonably happy.  I tap my suede-booted foot.    

Tuesday, October 11, 2011

On Being a Statistic

This post is a copy of an op-ed I submitted to the NY Times, in response to an op-ed they printed today.  I'm in the home stretch of getting the first draft of my book to the publisher, so I haven't written many posts this fall.  And now my next six-month follow-up is upon me.  I fly out on the red-eye to Boston, tonight.  On Thursday, I'll be riding the elevator of Beth Israel Hospital from appointment to appointment.  On Friday I'll be on Cape Cod with my family.  Here, in Alaska, it's glorious fall, hard frost at night, a cold disc of moon bright as a spotlight in the windows, and everywhere, warm discs of leaves spattering the grass, fluttering through the air.  The trees are adorned with gold spangles; they're loud, chattering and vibrant, barely hanging on.  The next big storm will strip the trees bare.  When I return, it will be winter.  

A year ago, I had my last chemo infusion.  One year.  Today, there is so much beauty out my kitchen window -- the maroon leaves of the chokecherry, the red berries of the mountain ash, the sun, the new snow dusting the top of Grace Ridge, the sun -- I can hardly stand it.  

Here is the op-ed:

In two days, I’ll once again be donning a hospital johnny and taking a seat in the mammography waiting room at Beth Israel hospital with a cadre of nervous women.  I’ll be distractedly leafing through a Lucky magazine, listening for my name to be called.  This is no routine mammogram.  In April of 2010, I was diagnosed with early breast cancer. Every six months I return to the hospital for the nerve-wracking regimen of post-breast cancer follow-up – mammogram and ultrasound of my remaining breast, blood work, examinations.  I’m one of those all-too-aware people for whom Breast Cancer Awareness Month is every month.  Follow-up jitters aside, I know I’m lucky to be alive and well.  To be a breast cancer “survivor.”  But I’m something else, too.  I’m a statistic.  Actually, I’m several.

I’m acutely reminded of being a statistic by new recommendations for prostate screening by the U.S. Preventative Services Task Force.  Two years ago, they revamped their guidelines for breast cancer screening too; the timing, for me, was unlucky.  Their justification:  statistics.  I’m here, as a statistic, to say that there are stories behind statistics.  There are lives. 

My first incarnation as a breast cancer statistic resides within the data on risk.  I had no risk factors.  I have no family history.  I’m thin.  I don’t eat meat.  I eat a lot of salmon and fresh vegetables.  I don’t smoke or drink.  I don’t get sick.  I went through menopause early.  Until my diagnosis, at age 44, I didn’t even have a primary care doctor.  Every year, I went to a family planning clinic for my annual exam.  In late fall of 2009, I finally made an appointment for a mammogram.  My clinical breast exam was normal, but my sister, a doctor, kept bugging me:  “You’re supposed to start when you’re forty.  Come on, it’s nothing.”  The night before my mammogram, before bed, I went online to peruse the front page of the New York Times.  There, I spotted a headline about new recommendations regarding mammography put forth by the U.S. Preventative Services Task Force.  Based on the statistics, they concluded that women with no significant risk factors could delay their first mammogram until age 50.   I read the article carefully.  And the next day, I cancelled my mammogram.  The rest, as they say, is history.  A few months later, I found a small lump in my breast.  It was cancer, Stage 2A, and it was aggressive.  I went through 8 months of treatment, and now I’m one year out, and rebuilding my life.

Would that mammogram – or better yet, one at age 40 – have detected the cancer? Saved my breast and lymph nodes?  Saved my body the ordeal of chemotherapy?  Who can say? Do I wish I’d never read the recommendations of the U.S. Preventative Services Task Force that night?  Do I wish I’d had the mammogram?  Unequivocally, yes.

In an Op-Ed on October 11, H. Gilbert Welch, a professor of medicine, has this to say: “Now let’s consider the winners — those who have avoided dying from breast or prostate cancer by getting screened. While there is some debate about whether they really exist, my reading of the data is that they do, but they are few and far between — on the order of less than 1 breast or prostate cancer death averted per 1,000 people screened over 10 years. That’s less than 0.1 percent.”  (The losers, apparently, are those who deal with false positives, not the dead). 

According to the National Cancer Institute, over 200,000 women will be diagnosed with breast cancer this year.  About 40,000 women will die of the disease.  How to contextualize 0.1 percent?  In terms of 200,000 women, it’s 200 mothers, daughters, sisters, best friends, lovers, mates, colleagues, cousins, aunts.  When it’s you, or me, or someone we love, buried in a number, in 0.1%, what does a statistic mean?

The other day, I ran into my friend Mike outside the post office.  Several years ago, when he was in his late thirties, a PSA test discovered he had aggressive prostate cancer.  It was, he was told, an exceedingly rare result.  He was a 1%.  He went through surgery and a long recovery, and now he’s fine.  What does we mean, what do we matter, two ski-loving, Scrabble-playing statistics, hugging in the warm October sun, so damned glad to be alive?