Sunday, March 30, 2014

Secrets



The technician who did my initial mammogram last June looked familiar – she lives in our neighborhood and takes walks with her family. If she recognized me, she didn’t say so, a silence I appreciated as she coaxed my breasts and torso into a series of awkward poses. Finally, she asked me to have a seat in the inner waiting area, but to stay in the bathrobe in case the radiologist wanted more images.

I waited, relaxed and comfortable, availing myself of the tea and magazines thoughtfully provided. When Lorie returned, she called me in for more images. This time we worked at squashing my armpit – site of the offending lump – into submission. Picture trying to turn your armpit inside out: it just wasn’t meant to work that way. Lorie was gentle and apologetic. And supremely poker-faced.

My friend MK MacNaughton debuted an art show at the Juneau-Douglas City Museum a few weeks ago, and sent me a version of the exhibit printed on card stock. Called “Secrets,” the show features MK’s charcoal portraits of 18 Juneauites along with, as MK writes, “their thoughts on the pros and cons of keeping, carrying and sharing secrets.”[i]

Lorie, my mammographer, was one of MK’s subjects. She told MK: “There’s a moment, as a radiology technologist, when you see something; know this is a turning point. You can’t show it or talk about it. Just knowing.”
Lorie was the first to know what I was in for. A seasoned professional, she kept her secret – my secret – from me.

After the mammogram, I had ultrasound imagery. Then the radiologist, a visiting doctor, came in. He rolled up a stool and told me my diagnostic imagery was “highly suspicious for carcinoma.”
I understood he was saying, “You probably have breast cancer,” but it didn’t register as a four-alarm fire.

The radiologist said I would need a biopsy, and asked if there was a particular surgeon I like.
Oh, I’m outta here, I told him. Sorry, Juneau, but after certain events, I made a solemn vow to myself and my family to leave town for anything more complicated than a hangnail.

It was early June; we had plans to travel to Seattle later that month. I asked the radiologist if it could wait a few weeks. No, he said; he was concerned the possible carcinoma was fast-growing.   
I walked to the cafeteria to find Brian and Alder. They’d wiled away three hours playing and eating. 

As Alder chattered about his morning, I mouthed to Brian, “It’s probably cancer.”

My phone rang while as I perused the cafeteria offerings. It was Zelda, a friend and the physician’s assistant who saw me after I found my lump a few days earlier.  

“Welcome to the world of cancer,” Zelda said on the phone.

Oh, I thought, is it really that serious? The radiologist had used the required hedging words, because only a tissue sample can yield a definitive cancer diagnosis. My natural defenses seized on the notion that nothing was certain yet. 

I later learned that my results were given the highest “BIRADS” score possible for diagnostic imagery, meaning the radiologist was as certain it was cancer as one can be without a tissue sample.

It was now Friday afternoon. Zelda and I bombarded Swedish Cancer Institute but our game of phone tag ended at close of business without an appointment.

That night my doctor, Kate, emailed me the radiology report. My knowledge of breast cancer went from about 0 to 60 as I systematically looked up every term. Based on the tumor measurements recorded, I deduced that my cancer – if it was really cancer – was probably stage 3. I vacillated between hoping it was just DCIS or LCIS – ductal or lobular carcinoma in situ, stage 0 or basically precancerous cells – and weighing guardianship options for my kids.

But mostly I distracted myself. It was a sunny weekend. Our summer housemate, Taier, was new to town and excited about everything, so we took her on our favorite hikes. Friends came over for brunch on Sunday. Individually, I told my parents, Rosie and Taier about the possible breast cancer diagnosis, and otherwise kept mum. I dreaded people’s reactions to the news.   

Over the next weeks, I shared my secret, gradually and mostly in writing. In late July I started this blog, figuring it would make it easier to update friends and family and control misinformation, and that it might be therapeutic. In some ways, the geographic remove from Juneau provides a natural buffer that makes it easier to share. What’s to be afraid of, anyway? Frankly, most people are too busy worrying about what we think of them to be judging us.[ii] 

So I am becoming braver – perhaps too brave. I was unceremoniously booted from a listserv a few days ago after sharing the URL for this blog. I knew I was probably running afoul of the rules, which prohibit members from divulging any potentially personally identifying information, but my heart was aching for the newly widowed members searching for connection.

A man whose wife recently died of breast cancer wrote that there were no support groups for young widowers in his area because, he was told, “men don’t need support.” I wanted to connect him to a diverse, non-anonymous, carefully gated online group, but couldn’t without his name. The clunky listserv he found, which I don’t usually follow, is dormant for months on end and just doesn’t work well. To quote my tech guy, “Email is so 90s.”

I’m not convinced the listserv is completely safe anyway. A savvy teenager could probably get an IP address and track someone down in half an hour. And 13 years as a political reporter taught me that anything put in writing should be considered public, or potentially so. Online privacy an illusion, so we’d best get over it and just be judicious about what we share. 

MK’s “Secrets” subjects had many things to say. Kevin, a teenager whose mother was killed in a gang shooting, said, “I like to talk about my mother’s death, because if I don’t, it’s like a brick wall holding my shoulders down.”

Four-year-old Sun Woo told MK, “[A secret] Is when you can’t tell other people, you have to tell just one people.”

Ericka observed that our secrets evolve: “When I was younger, secrets were fun. … They’re more serious now. Heavier. Harder to hold.”

I wondered if a measure of the darkness or trauma in a person’s life is the weight of the secrets they hold – not so much a measure of our innocence, but a measure of what we have witnessed or experienced. Perhaps sharing those secrets lightens us, lightens the burden of living.

“Secrets” was the theme of the Mudrooms talk I did in May 2012[iii] and I opened with Alder’s endearing ignorance of the concept. It is a gift not to know or hold secrets, to be innocent of that burden.

But it’s also natural to gain secrets – our own and others’ – as our experiences accrue. Perhaps this private life – our secrets – give us personhood and authenticity.

“In a very deep sense, you don't have a self unless you have a secret, and we all have moments throughout our lives when we feel we're losing ourselves in our social group, or work or marriage, and it feels good to grab for a secret, or some subterfuge, to reassert our identity as somebody apart,” said Dr. Daniel M. Wegner, a professor of psychology at Harvard in a 2005 New York Times article on people with secret lives.

One of the key markers of separation for adolescents may be when they start to have secrets, private thoughts and experiences, that we as parents are not privy to. It’s a little scary as a parent to navigate the fuzzy border between a teen’s need for privacy and the parental urge to protect.

At Camp Golden Arrow, the summer camp I attended when I was 11 and 12, we raised and saluted the flag each morning and then sang a German-translated song: “My thoughts are as free as winds on the ocean, and no one can see their form or their motion. No hunter can bind them, no trapper can find them. My lips may be still, but I think what I will.”

As with everything, the challenge is to find a balance –  to maintain a healthy buffer of privacy but to unload the toxic secrets that can maroon us on our own personal island of suffering.  

****

For those of you looking for an update on my health, I’m kind of tired of the topic so here’s the take-home message: I’m doing well! Ratcheting back steroids, ratcheting up menopause, and focusing on resting, walking and good eats. Brian is visiting this weekend and we’re looking forward to seeing friends in Juneau next week, and to a visit with Rosie later in April. As always I feel profoundly grateful and karmically indebted for the caring and kindness that’s been showered on us. 

And a note: In an effort to make this blog more accessible and interactive, I've opened comments to anyone who would like to leave one ... assuming I've interpreted and managed the settings correctly.


[i] MK’s “Secrets” will be up a bit longer and then moves to Sitka! Secrets will open in Sitka Saturday April 12 at Rio’s: http://www.mkmacnaughton.com/#!exhibits/vstc2=future


[iii] Mudrooms is a Juneau event featuring seven speakers sharing a seven-minute story on a particular theme each month. The May 2012 event,  in which I participated, is archived here: http://mudrooms.org/archives/secrets-may-9-2012/
Fun with Luke!

Happiness is strawberries and French toast in your jammies in the sunshine.

Last Sunday's adventure included discovery of blue heron nests within walking distance of our townhouse.

Legos and leopard geckos. Who'd a thunk it?

The secret to getting Alder's cooperation for the camera is to feature his Lego creations. 

The snack that is weaning me off my chocolate chip habit. Maple-cayenne pecans: 4 cups raw pecans, 1/4 c maple syrup, cayenne and salt to taste. Stir well and bake on lightly greased sheet at 350 for 5-10 minutes, stirring every few minutes. Try small batch at first as these can be tempermental ... but worth it! (recipe adapted from The Cancer-Fighting Kitchen)

It's a good day when you eat all your meals outside.

One of my biggest grievances with this island. Alaska has this one right -- tidelands should not be fenced off by the wealthy.

Alder helped our wonderful former neighbors dig post holes in their garden.

Thursday, March 13, 2014

Falling shoes



Cancer and cancer treatment somehow failed to make a real impression on me; assuming the cancer didn’t kill me, I figured after treatment I would return to my normal level of physical function and ability.

But with last month’s hospitalizations, I experienced the new and unsettling reality of a possibly chronic condition affecting my ability to inhale, along with everything that requires a good solid breath of air. I felt vulnerable and disheartened, unsure of my recovery, overwhelmed by blood draws, recurring symptoms, and the accompanying pharmaceutical armada that arrived.

Last Thursday, as I started the third week of my tapering dose of corticosteroids, the now-familiar chest pain returned. At radiation I asked the staff to take my vitals and sure enough, my blood pressure was down and my heart rate was up: pericarditis symptoms were back. By Friday I had taken another spin through the ER, which is a pretty handy one-stop shop when you need a quick echocardiogram, chest X-ray, blood draw and EKG. As I hoped, I didn’t need to be admitted, but as I feared, my steroid dose was nearly tripled. We’ll try again to taper.

It’s a good thing Joy and Leah visited over the weekend to pull me out of my dejected state. They hauled a stash of halibut from Debbie and Ben (I think we have enough food now!), dragged us on a long-overdue Costco mission, got up early with Alder, and made us smile.

Monday I donned my fuzzy pink robe and strode past the CAUTION HIGH RADIATION AREA sign one last time. I completed my dose of 6,000 rads or centiGray to the previously cancerous area, rang the bell and hugged Anthony and Dane (Tianna, the third tech, wasn’t there). Despite my sketchy feelings about the treatment, I feel genuine warmth for the staff at my radiation center, especially the three techs, two of whom have Alaska connections. (I never tired of teasing Anthony about growing up in Wasilla.) They welcomed each patient like a friend dropping in for coffee each day, played eclectic music, smiled warmly and bantered readily.  

On Tuesday I met with my new internist, Bob. Bob said all the right things to me, starting with: “You will absolutely come back. … This is not your new reality.”

He pointed out that I finished radiation. My immune system will come back. I’m getting stronger. “All you have to do is relax, believe, hydrate, walk, rest extra, and know that next month will be better.”

He knew a little of my history and I gave him a ClifNotes version of the rest. He said: “You’re wondering, ‘When’s the other shoe gonna fall?’ The shoes have all fallen.”

Not being God, he has no real authority to say it, but I needed to hear it. I need to believe it. The shoes have all fallen.

“Psyche and soma go together,” Bob said. “Believe in yourself.”

I don’t think I realized just how far that belief had fallen until he said those words. I had not taken a walk, much less run, in five-plus weeks. Granted, I was bedridden and attached to an IV pole for much of February. But when I wasn’t, I was felled by fatigue and fear – fear of pain, fear of my body, fear of drugs, fear of blood draws, fear of a compromised future. I stopped racing Alder down the street from the bus stop. I stopped walking to Swedish from the ferry. I moved slowly and carefully, wary of triggering some unknown enemy within.  

Bob’s role was somewhere between cheerleader and diety – with the authority of an MD – telling me to get over it.

I walked out of our appointment down to the ferry, smiling up at the sun, ready to believe. Yesterday I walked and explored from our new townhouse and discovered a small beach ten minutes away. Mt. Rainier was visible in the distance, a shimmering reminder of last summer’s camping trip and adventures to come.

I think I’m ready to find a balance between the frenetic effort to recover immediately (January) and disassociated hopelessness (February). It is March, and the shoes have all fallen. Psyche and soma, mind and body, go together. It is time to strap on the shoes and walk. It is time to begin healing.

Halibut curry, pad Thai, jigsaw puzzle and friends = good times.
Anthony and Dane, purveyors of external-beam radiation via linear accelerator. Aka radiation techs and nice guys.

Alder's new approach to monkey bars.

Meanwhile, Rosie drums with my parents' neighbors, part of our extended village on the east coast.

Fennel-orange salad inspired by Full Circle Farm gift delivery. Chop fennel bulb, orange segments and onion; add olive oil, rice vinegar, salt and pepper (best if dressing is mixed first).
Sunny walk smile.

Wednesday, March 5, 2014

Life is but a (school) bus



A friend recently wrote sharing news of her partial victory in a difficult divorce. I sensed a wariness in her tone, which suggested no one greet this bit of good news with too much enthusiasm. I responded to her:  

“In my experience of trauma and transition there are no big moments of closure, victory, or exultation. It is a process, tiring and winding, up and down, internal and external, non-linear. Sometimes others want to inject these artificial, wishful concepts – especially ‘closure.’ You are wise to quietly head off too much cheerleading from well-meaning friends and family who may not understand the ongoing nature of the process.”

This circuitous, unpredictable trajectory has been the theme of the past month for me. I was cruising along, maybe 95 percent done with my cancer treatment, when an ominous chest pain set in on February 1. A cascading series of medical mishaps and other setbacks put me in the hospital for the better part of the month (that’s just an expression, as Alder would say – it was actually the worse part of February).

As I noted in my last post, I was discharged from the hospital February 14 – which happened to be the date Alder and I were scheduled to leave Bainbridge and fly to Boston for a visit en route home to Juneau. We canceled the trip and the move and I laid low that weekend. By Monday I was relapsing, with spiking fevers and white blood counts. On Tuesday I was readmitted to the hospital – just hours after Rosie and my mom arrived to visit us for Rosie’s and Alder’s coinciding school breaks. My father flew back to Seattle to help referee the ongoing medical mayhem.

Hospitalization II, which lasted four days, was somehow lonelier than the first. An institutional mentality began to creep in; I began to see my days as lifeless stretches of time punctuated by the occasional meal and doctor visit. I developed an almost pathological horror of blood draws as my battered veins became increasingly elusive. I didn’t read. I watched a little Olympics on TV at night. I didn’t really want my kids to visit and see me a listless invalid in an antiseptic environment. I didn’t have much to say. I took fewer walks around the unit; it felt too tiring.

My doctors and I came to agree that the non-steroidal medications I was taking, in high doses and for a gut-threateningly long period, were not curing what ailed me. Another battery of tests (read: blood draws) revealed I had RSV, a respiratory virus probably acquired during Hospitalization I. My inflammatory markers – general measures of inflammation that don’t necessarily indicate the cause of the trouble – were higher than anyone could explain.

I finally started steroids, and saw immediate improvement. The downsides of steroids are the side effects – notably restlessness, moodiness, and over a longer term, bone density loss, potassium depletion and a moon-shaped face – along with the fact that symptoms often recur upon withdrawal. I am on a step-down dose over five weeks and hoping my body takes over as the steroids are withdrawn.

I’ve been out of the hospital for about 10 days now. My cardiologist last week said my heart looks good, and my oncologist is getting my cancer treatment back on track. She gave me a shot of Lupron in my hip to shut down ovarian function (and my hip function, it turned out). So along with steroid-induced madness I am bracing for a(nother) crash-course in menopause. Once we get menopause going, I’ll restart Letrozole, the aromatase inhibitor I need and loathe. Eventually I get to choose chemical (Lupron) versus surgical (oophorectomy) means for long-term menopause. Oh, the joys!  

My radiation oncologist has been pestering me to complete the last five radiation treatments, which I resumed today with some misgivings. Put bluntly, I believe my heart and lung issues may be radiation induced. There is a known, though low-incidence, causal link between radiation to the chest area and pericarditis. My radiation oncologist is dubious; radiation pericarditis generally shows up three to six months after treatment is finished, and I’m getting radiation to the right side while the heart is on the left. But each person’s “field” is different depending on the location of their tumors, and in my case the field is large and deep. I reported difficulty breathing the second week of radiation; I asked my doctor if this could be due to impacts of radiation on my lungs but she said no and I convinced myself I was being paranoid. I do have a tendency to read too much.  

Fortunately I have only the “boost” left, five treatments limited to the mastectomy scar area. The damaged scar tissue is less oxygenated than normal tissue and so takes up less radiation, according to my radiation oncologist. The extra radiation to the scar is meant to make up for that lowered uptake.  

Meantime, after eight months of giving over their home, my sister- and brother-in-law needed their house back. My father put on the full-court press for us to come to Boston where, he felt, I could get better medical care and support. I felt that after the mishaps of February, my doctors and I are chastened about my vulnerability and more vigilant about my care. Both kids are thriving and I don’t want to disrupt their tenuous and hard-won equanimity. Finally, the thought of moving across the country – away from this peaceful island into the honking-traffic nausea-inducing chaos of Boston – was entirely enervating. I am clearly, viscerally, no longer a city person. My father ultimately came to understand my decision, and following his advice I’ve found a good internist in Seattle to help guide my care in a more holistic way.

My engineer friend Rorie says, most people doing a project want three things: they want it done fast, they want it done well, and they want it done cheap. Pick any two, he says. And so it was with last week’s search for housing on Bainbridge: we wanted something fast, we wanted a short-term lease, we wanted to stay in the Ordway Elementary School bus boundary, we wanted furnished, and we wanted affordable. We were fortunate to find four of the five. But hey, it’s only money, and we’ve been spared untold expenses thanks to the generosity of John’s family and mine.

Alder and I will miss our old neighborhood. Every morning 15 kids with their coffee-toting adults and a smattering of over-excited dogs dribbled in from the driveways of our no-outlet neighborhood to wait for the school bus. I’ll miss the zombie walk, as Brian called it, and especially the zombies, who became kind-hearted and generous friends to us.

And we’ll miss Phil. Bus driver Phil said hello and goodbye to each child by name every day. He sang “Frosty the Golf Course” as they passed Meadowmeer on cold mornings. He set up a Superbowl contest. He regaled the kids with stories and songs and plied them with baseball cards and candy. He reminded Alder not to leap over the head of our neighbor Lucy, who would sit on the bottom stair getting off the bus. He assiduously recorded and reported the license plate of any driver who threatened our children’s safety.

You never know where the grace in your life will come from. Phil was a force of warmth and energy that fed Alder’s soul – and one of many people who has convinced me that there are infinite ways to make a difference in this world.

Orange blanket from Joy and painting by Rosie comforted me during Hosp. II.

Feeling happy, human and healthy again with Brian, my dad, my brother-in-law Chris and our friend Nu after Discharge II (pic by Therese).

Amy held my hand through last week's transitions and decisions.
Alder looking slick in our new kitchen.

Gratuitous self-involved photo.

We took advantage yesterday of a fleeting visit from the sun (I sheared Alder's 'fro shortly after this pic was taken).