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
[ii] I just love this NYT piece, “What You Learn In Your 40s.” Hint: it’s not about you. http://www.nytimes.com/2014/03/01/opinion/sunday/what-you-learn-in-your-40s.html?action=click&module=Search®ion=searchResults%230&version=&url=http%3A%2F%2Fquery.nytimes.com%2Fsearch%2Fsitesearch%2F%3Faction%3Dclick%26region%3DMasthead%26pgtype%3DHomepage%26module%3DSearchSubmit%26contentCollection%3DHomepage%26t%3Dqry318%23%2Fwhat%2520i%2527ve%2520learned%2520in%2520my%252040s&_r=0
[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.|
|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.|