In the details: on anniversaries and transitions

Oligodendroglioma. Oddly beautiful, right?*

I sometimes wonder if I'm cursed with recalling details that don't really matter: Lines from The Brady Bunch’s "Measles" episode. "Lumpy Lombardo," the nickname for my 5th-grade math teacher, so given because it often seemed as if he was adjusting himself through his pants pocket, to put it politely. The license plate NY 694-FAD, on my nana’s old yellow Jeep Wagoneer.  What I wore on the first day of junior year of high school (my US Open 1987 sweatshirt and a denim miniskirt). Hardly memories worth keeping.

Some details evoke times that I will always want to return to. The scent of boxwood, which some liken to cat urine, brings me immediately back to my great-grandmother Romie’s fine approximation of an English country garden at her small house on Orange Lake in Newburgh, NY, and the days as a child, younger than my daughter is now, when I’d swim in that murky water until I shivered and finally had to call it quits. As I was toweling off Romie might produce a decades-old bottle of peach brandy from under her sink, thinking that a nip might warm me.

Other details seem insignificant on the surface. How Kool & the Gang's "Joanna" was on the radio as my family drove up the West Side Highway after a ridiculously cold 13th birthday celebration at Rockefeller Center in mid-January. I recall knowing I was warm and loved as we headed home to suburbia, but still felt the pull of the myriad lights and wonders of New York.

Then there are details that always seem to matter, because as sentient beings we seek to mark the passage of time. Holidays. Birthdays. Anniversaries.

Three years ago this month my world was upended when, about 10 days after a seizure, I was diagnosed with an intrinsic tumor on the right frontal lobe of my brain. Inescapably confronted with my own mortality, I felt abject terror the night before surgery, not knowing if I would awake afterwards as the same person – or at all. I signed a release for surgery that night, and despite my Kiwi neurosurgeon’s chipper confidence as he joked, “Well, and you acknowledge that there is a risk of death, although I think that’s very unlikely,” I simply did not know what to expect.

That first year after my diagnosis was one of regular upheaval, both physical and emotional. In some ways the surgery and the radiation treatments were the easy part. I had a regular schedule, was on “sabbatical” for the first time in my adult life, and was at liberty to do nothing but sit on the beach, nap, make friends with neighborhood cats, perfect my Kiwi accent, and eat hokey-pokey ice cream and copious amounts of spicy knife-cut Dan Dan noodles. Soon enough we moved from New Zealand and American Samoa to an apartment in Providence; six months later, we moved back home. I stared down punk-ass kids on the RIPTA bus who clearly wondered about my punk-ass hair. I cried a lot. Radiation made me weary for months and a single late night or extra glass of wine could sideline me to bed for a couple of days. “Normal” life had never felt so hard.

I also had to give up a job I adored in American Samoa, a place I had come quickly to love. I wasn’t sure that I’d ever work in the field again, which felt like one of the biggest tragedies of all. I had invested so much in starting a global health career at a relatively late age, and fucking cancer had to go and screw it up. 

But here I am, resilient and resolute and, most fortunately, healthy, as far as I know.** My current aches and pains and such are far more garden variety middle-age complaints. (I need to run more. I need to stretch more after running. I need to stretch more, period.)

And so it is that exactly three years after I received my cancer diagnosis, I was offered – and gladly accepted! – a position as a field coordinator in Eldoret, western Kenya.

Perhaps if the devil is in the details, so is the blessing. October 12 is never going to be an anniversary to celebrate, but I still hope to see many, many more - next year from Kenya. 

Grace and peace,
Kelley


*Oligo (cancer slang!) image from Martin J. Van den Bent, Michele Reni, Gemma Gatta, and Charles Vecht. 2008. "Oligodendroglioma," Critical Reviews in Oncology/Hematology 66(3): 262-72.

**I still get regular MRIs and have one this week. Prayers/good vibes/crossed fingers always appreciated. 

July: A few inchoate thoughts on American independence, exceptionalism, and justice

July. High summer.

I love July. I wake up early and it smells like flowers outside - I'm not sure whether it's the nascently-blooming butterfly bush or the fragrance of the enormous mimosa tree in a neighbor's yard that is wafting toward our house.

The 4^th of July is arguably my favorite holiday. It’s the only holiday the US celebrates in the summer* and that isn’t tied up in religion or expectations about family, which helps to make it feel freeing, appropriately so, since it’s a celebration of independence. Add to that the fact that the weather is often wonderful and that there are always fireworks, and in many ways, it’s an easy day to love. And not least, high summer is when one should be wearing Lilly Pulitzer, an American original. So there’s that…

But I also feel ambivalent about a holiday that, in its celebration of American independence, often morphs into a celebration of American exceptionalism, even sometimes by people who I think should know better. And frankly, I can’t get behind that.

Perhaps it's because at this point in my life, I’ve traveled to most of the major regions of the world. I’ve seen what other countries do well, and how and where they fail their citizens. In every place, there is inequality, and the citizens who lack political power and experience poorer health are almost always the poor, women, and racial, ethnic, and religious minorities. As much as I loved New Zealand - and am grateful for the superb healthcare I received in Auckland - I don’t think I have idealized it. I witnessed racism, sexism, and homophobia there. No place is perfect. But increasingly, I feel like the US is falling so, so far behind its peers. 

New data published in the Journal of the American Medical Association bear out my sentiments, at least as far as health outcomes go. Check out the chart and a distillation of the data here.

As Kevin Drum says, on most measures, “we suck.” We’re not below the mean in any of these major outcomes.  We’re simply not the leaders we think we are.

I’m not suggesting everyone should move to Iceland (I’ve heard it’s beautiful, but brrr). And even my beloved New Zealand isn’t tops in a lot of outcomes. But the US could – and should – do better.

I realize that I’m extremely, extremely fortunate. I’ve got a wonderful oncologist, and, most critically, I’ve got comprehensive health insurance that costs me relatively little. The Affordable Care Act should help bring more people into the fold of good healthcare, eventually resulting in better outcomes, but many may still be left behind. I don't think it's exceptional that I have good care, or at least it shouldn't be. I think it's lucky. I don't consider myself Christian, but I think of the lesson of Matthew 25:40, and often wonder, as many others have, whether we serve the least among us. 

It is not just healthcare where we fall far short. Worldwide, the US actually ranks higher on gun homicides per capita (26^th!) than we do in health outcomes among OECD member countries (28^th of 34). Hooray?

I'm thinking a lot about gun violence and race again this morning in the wake of George Zimmerman's acquittal of the killing of Trayvon Martin. That verdict, and its ironic counterpoint, the guilty verdict in the trial, also in Florida, of a woman, Marissa Alexander, who fired warning shots against an abusive husband. Zimmerman walks free, and the judge in Alexander's trial sentences her to 20 years. Trayvon Martin was black. Alexander is black. Both cases used the "Stand Your Ground" self-defense law to argue innocence. Two cases - one black unarmed teenager dead, one black mother with no criminal record soon to be incarcerated. 

In his review of the new film "Fruitvale Station," based on a case in which a young, unarmed black man was shot to death by a transit officer in Oakland, California, New York Times critic A.O. Scott, always astute, writes that the film succeeds in 

"defusing facile or inflammatory judgments and bending the audience’s reflexive emotional horror and moral outrage toward a necessary and difficult ethical inquiry. How could this have happened? How did we — meaning any one of us who might see faces like our own depicted on that screen — allow it?"

We need to ask ourselves these questions, and we need to stop our flag-waving long enough to engage these conversations. We could be exceptional. But right now we're exceptional only in all the wrong ways. 

*One can’t, and shouldn’t, count “Victory” [over Japan] Day , which is still a Rhode Island State Holiday.

Cape Town Style

Sunset over Table Mountain, May 2013:

the view from the front door

I write from Camps Bay, a southern suburb of Cape Town, South Africa, and when I started this post earlier today I was looking due west across a pink morning South Atlantic horizon. If you drew a straight line west to the next big land mass, you'd bump into the border of Brazil and Uruguay.

Winter approaches here: the days are short, with sunset around 6:00 pm, cool enough for heavy fleece when the sun is low and I wrap my hands around a mug of tea (or a generous glass of Pinotage). We're staying with dear friends who are here on sabbatical and who are kind enough to open their gorgeous flat to us.

There's something very comforting to me about being back in the Southern Hemisphere. It's been, of course, almost two and a half years since I left the South Pacific. South Africa is decidedly different from NZ in many ways, but there are enough similarities - from the craggy shoreline rocks to the bottle brush trees, to the Norfolk Island pine silhouetted against the sunset, even small things like the fact that arugula is called "rocket" and a latte-type coffee drink is called a "flat white" - that I feel a bit like I'm back on my "radiation vacation." 

Another similarity is that both NZ and Cape Town are known for outstanding local design. Yesterday we ventured into slightly gritty downtown CPT and walked around Long St., where upmarket boutiques sell the best in South and pan-African design near a tourist market full of more pedestrian (but still fun) "African" tchotchkes (some of the fabrics looked decidedly Indian). There's some serious style here, and the younger, more fashion-forward set - including this beautiful young woman trying on sunglasses - wouldn't be out of place in, say, Brooklyn:

What makes this design scene very different from the States, however, is how affordable locally-designed, locally-made clothes are. As someone who rarely buys new clothing, I appreciate knowing that there are places where style can be had on a budget without being mass-produced. At the boutique Mungo & Jemima, I got this adorable sailor-style top by South African designer I Love Leroy:

I also stumbled into a shop called Merchants on Long, which has some of the most amazing modern African clothing I've ever seen. Their goods are ethically produced by designers across the continent, and last year the Financial Times described it as "the continent's premier resource for the best African-crafted design in everything from fashion to homewares, and even music."

I was surprised and delighted to find this enormous silk & cotton scarf by Kenya-based LaLesso, because I recognized the pattern from something I had been ogling online from home. Obviously, now that I know I CAN MATCH MY SCARF TO MY ESPADRILLES, I will be buying those. 

The most beautiful objet du jour, however, was another scarf that I purchased from Merchants on Long. Made by the Johannesburg-based company African Strings, it pairs a silk Liberty-print fabric with traditional Zulu beadwork, to stunning effect.

Merchants on Long's Twitter feed last summer suggested that one could wear it like this, but the beading might be heavy:

Lest it seem as though all I've been doing is thinking about and buying beautiful textiles, let me edify you, dear reader: have you heard of fynbos? 

It almost sounds like an old-timey curse, but it's not. (Still, I can imagine someone hurling it as an invective.) This small area of the Western Cape has its own unique and very rare vegetation type, known as fynbos. Indeed, the flora here are so unusual that the beautiful "silver trees" in the yard and near the house here occur in nature only on the slopes of Table Mountain - so I feel very lucky to have seen them. 

In fact, I just feel lucky, period.

Namaste,

Kelley

The merest of starts

I wore a pair of my great-grandmother’s Alice Fischer earrings yesterday, as I did on Friday. This family connection was something I must have subconsciously felt I needed in the wake of the past week’s many tragedies. 

Fischer, the designer, was a friend of my great-grandmother's who was trained as a ceramicist in Vienna, held at a concentration camp in Morocco during the Holocaust, and, following safe passage to the US, settled with her partner in Woodstock, NY in the mid-1940s, where she resumed her artistic calling. She was sufficiently successful that her jewelry was copied, and some of her buttons, which graced a bespoke dress from Henri Bendel, were on the cover of a 1945 issue of Vogue (more images of Fischer's jewelry here).

I think of those whose lives are lost due to hate and violence - and those whose lives are forever changed but who survive, like Fischer, and go on to add more beauty to the world.

I sought beauty yesterday afternoon. I wanted to nap, and indeed often on Sundays we take that small indulgence for 45 minutes or so, somewhere between returning home from church and beginning to think about the week ahead, with all the mundane details of cooking, laundry, and other things that tend to take up so much literal and psychic space in our lives.

But the fine spring day beckoned. I am perennially smitten by the season: the car-alarm cardinal calls, the bulbs from Easters past, redbud trees about to burst. And Carson wanted to plant some seeds in our garden. So I transplanted some herbs that had weathered the winter; harvested some brussels sprouts that had also, inconceivably, weathered the cold only to grow larger. We planted watermelon seeds in small compostable cups, with the hope that they will germinate soon.

We made the merest of starts. 

We’re terrible gardeners, cursed with lofty goals and expectations but little practical knowledge and even less dedication. And it occurs to me that so often, I make the merest of starts with other things. But even the merest of starts can feel great. 

I want to be someone who pauses to acknowledge beauty, who creates beauty, who learns everyday. And often that means that other things fall away. It's more important that in my spare time, I'm down on my knees contemplating this bleeding heart in my garden than, say, dusting. 

I admire those people who exhibit real dedication to their craft. I suspect I'll never be one of them, that I'm fated to keep making the merest of starts. Perhaps I am something of a dilettante, but I want so very much from my short time in this life, and given the obligations of work and everyday life - grace though there may be in those - that dedication is hard for me to fathom. I want so much, and the list is nearly endless, but it includes the bleeding heart appreciation; listening to weird time signatures; belting out bluegrass harmonies; falling in love with baby foxes in our neighborhood. Falling in love with people and their stories.

Noticing beauty. The merest of starts. Falling in love with the world, again and again and again, amen.

Namaste,
Kelley

Poppin' Tags

Vintage Burberry polo (Salvation Army, Houston, TX)

and vintage Ferragamo oxfords (eBay)

It's not warm enough yet in New England to wear short sleeves - except for in a picture like this. Perhaps not the most flattering picture of me, but it was a challenge to fit both the collar and the shoes in the same photo. And they clearly had to be paired, because both are new to me...

We returned a few days ago from a wonderful trip to Houston to visit family, meet extended family, celebrate my daughter's birthday, and attend the annual Livestock Show and rodeo. But no trip to Texas would be complete without a trip to its thrift stores, where I've scored big in the past. So, a few hours before we needed to leave for the airport, we ventured to a nearby Salvation Army and Value Village for the hunt. 

First find was the vintage Burberry polo in the photo above. For $2.75. It's a little on the small side - I wish polo shirts didn't have such a tendency to shrink up. But I do mean vintage. Check out the label:

Of course, that was only one of several finds. Nothing else was quite as spectacular, clothing-wise, although fun (e.g., a quilted burnt orange faux-silk UT vest with the Longhorns logo!). But there was one non-clothing find that demanded attention:

Vintage BA travel bag (Made in England!), $3.99.

Being at least somewhat practical - I knew, realistically, that it was unlikely I'd ever carry it - I walked away. And then, perhaps experiencing non-buyer's remorse, I told my daughter's 13-year old cousin about it, and we wandered back through the store together. He loved it. I bought it for him as a belated birthday present. It fits his laptop, and he's thrilled. So am I, knowing it will have another life. 

There's never enough time - or money, or room in our suitcases - to look thoroughly, but it just means I'm that much more motivated to go on the hunt next time I'm there. 

We all belted out "Thrift Shop" on the drive back to the house, high from the thrill of a successful hunt. (For the few who haven't heard this, the language is NC-17, but the sentiment is fantastic.) No, there were no broken keyboards, seat blankets, or kneeboards purchases, but we popped some tags all right. (And yes, I realize that I sound ridiculous using this kind of slang.)

Sayonara,

Kelley

The Cancer Continuum

Celebrating two years post-treatment with no new tumor growth 

(and how my Grand Fonds scarf matches the painting in the oncology wing).

South Shore Hospital, February 14, 2013

Like so many others this winter, I had a persistent cough/cold/sinus infection (or some combination thereof) dogging me for a couple of months. I won’t go into the gross details, but suffice to say that I finally went to the doctor a few weeks ago to see what could be done.

The doctor - not my regular physician - put me on a 2-week course of a very strong antibiotic, which eventually made me feel like myself again, thank goodness, but that’s not what was interesting about this visit.

When the nurse first escorted me into the exam room, we had the following exchange:

 “Aren’t you the one who had a brain tumor?”

“Still have it,” I smiled.

“They couldn’t get it all out?”

“Well, not without making me a vegetable.”

I said a few things about how lucky I’ve been to have such good care and to have had a very cautious neurosurgeon, etc. etc., before we finally got around to the reason I was there.

One of the things I learned fairly early on after my diagnosis is that I’ll encounter people every day who don’t know how to talk about cancer and the emotions that it engenders in them. It is, after all, a profoundly discomfiting subject.  But out of necessity, I’ve learned to talk about it dispassionately, treating it as any other matter-of-fact aspect of my life, like “I have a daughter in third grade” or “I drive a Subaru.” 

Of course, it’s a lot easier to be dispassionate when you’re not currently undergoing treatment, and you’ve got the emotional distance that time brings. Not to mention when you don’t necessarily “look sick.” So how did the nurse know I had a brain tumor?

She obviously remembered me from the day, many months ago, when I went to see about getting an antidepressant to help combat my really weepy times. When the nurse screened me that day, I wasn’t suffering from major depression. So she was a bit puzzled, then, as to why I was there. Well, I have a brain tumor, I had told her. (Also, the screening instrument is useful, but imperfect.) And sometimes  I lie awake at night thinking, “I’m going to die young.”

"Well, keep your chin up," she had said.

(Guess what? Prozac helps me do that.)

Anyway, at this recent visit, when the doctor - again, not my regular physician - came in, we talked about how long the sinus infection had lingered and how to treat it. Reading my electronic medical record, she noted that I am on Tegretol, an anti-seizure med prescribed by my oncologist. "Why do you take that?" she asked.

"Because I have a brain tumor," I answered. 

"Is your immune system compromised?"

"No, I finished treatment two years ago." 

One might think or hope that with a pre-existing condition as serious as a glioma, there would be something on my medical record in all-caps, flashing BRAIN TUMOR, with a link to my treatment info. But obviously, one would be wrong.

This isn't uncommon. The Journal of the National Cancer Institute devoted a 2010 special supplement to how oncologists and primary care doctors can work together in the longer term "across the cancer continuum." As with any other "chronic," long-term disease, many cancer patients will have intense periods of active oncology treatment followed by years of remission, in which they need more standard medical care.  From the abstract of the study by Grunfeld and Earle, who also note that most cancer survivors will die of causes other than cancer:

The period after completing primary and adjuvant cancer treatment until recurrence or death is now recognized as a unique phase in the cancer control continuum. The term “survivorship” has been adopted to connote this phase. Survivorship is a time of transition: Issues related to diagnosis and treatment diminish in importance, and concerns related to long-term follow-up care, management of late effects, rehabilitation, and health promotion predominate. In this article, we explore the unique challenges of care and health service delivery in terms of the interface between primary care and specialist care during the survivorship period. The research literature points to problems of communication between primary and specialist providers, as well as lack of clarity about the respective roles of different members of the health-care team. 

As another study noted, "not infrequently, it is the patients who must attempt to fill in the gaps between providers." Quotes from patients highlight frustrations like mine when they see primary care doctors. So while I'm very glad to be where I am on the cancer continuum, I'm always going to be someone for whom such issues arise - and indeed, just last week, I had to discuss my diagnosis with my eye doctor, who now wants to see me annually instead of every 2 years. 

I mention this in part because like so many other aspects of cancer, this was one I didn't anticipate. You're constantly having to out yourself and to be, as a survivor quoted in one of the JNCI studies said, your own "quarterback." I feel fortunate that I'm pretty good at that, and also that I have excellent relationships with my primary care doctor, my oncologist, and my therapist. But on those occasions when I'm seeing a different provider, I'm reminded just how pervasively cancer changes things.

On a brighter and more dapper note, it wouldn't be a post from me without a photo of my thrift scores. The blond cutie and I are some of each other's biggest fans.

Jacket: from Savers. Pocket square: from the same dumpster as some of the goodies highlighted in this post. Pants: Ann Taylor Loft, from Savers. Shirt: Thomas Pink (sale). 
Scarf: Savers. Shoes: vintage Ferragamo wingtips from eBay. 
On the girl: sweater (no tags), mini-Boden pants (consignment!)

Namaste,

Kelley

In Xanadu

Happy New Year!

I was truly fortunate to spend last week in sunny (if unseasonably chilly!) San Diego, CA, where my sister Gillian was part of a photoshoot for an upcoming issue of American Way, the inflight magazine of American Airlines. She won their annual "Road Warrior" contest, and so she and the other 4 finalists and their guests spent nearly a week being wined and dined, among other luxuries, at the Grand del Mar, a five-star resort. The good folks from American Airlines Publishing have my sincere gratitude for making my visit so full (literally - my pants are tight) and so much fun.

It was a good thing that I packed all my nicest clothes for this week, because everybody, everywhere, was impeccably dressed. Nonetheless, I often felt as though my wardrobe was completely inadequate: this place was an entirely different league than I'm used to, even with my Greenwich, CT birth and Seven Sisters education. Forget the so-called 1% - the guests there are more like the 1% of the 1%. But I did what I could to hold my own:

(Me, on 1/9/13, in our suite at the Grand del Mar, San Diego, CA.)

Secondhand: Kelly Cushing bat-sleeve silk jersey top, 

Trina Turk white pants, Anyi Lu peep-toe heels.

Much of this post was written when I was comfortably seated by a fire in the lobby listening to some industry folks discussing the pilot they were shooting for a remake of the Roger Moore TV series "The Saint." We guests were warned that the shoot would involve a helicopter crash and a gunfight, as well as a stuntman jumping from a 3rd story platform into a 5' pool. Over the course of two days, I watched a rehearsal for the gunfight scene, felt the explosion, heard the gunshots, and saw the stuntman, dressed as a waiter, yell and do a running jump that ended in a flip into the pool. (Everybody clapped, and some time later we saw the medical backboard being carried out, so it seems no one was hurt.)

I wasn't familiar with Adam Rayner before seeing him this past week, but it was immediately very clear that he was the star of this show. (The female lead was Eliza Dushku, who I never saw in person. Joss Whedon fans know who she is.) It wasn't just that Rayner was tall, ridiculously good-looking, and often wearing a perfectly tailored suit. It's more that I doubt that anyone who wasn't the star could get away with wearing a bathrobe in this lobby when he was out of costume. I mean, come on:

After a few nights at this place, all I could think was that I was staying in Xanadu. That's the name of Charles Foster Kane's mansion in Citizen Kane, and since that film was (loosely) based on the life of magnate William Randolph Hearst, it's no surprise that I'm not the first person to make the association. (That link, to a HuffPo review, has lots more photos.) 

But I was also thinking about Xanadu from the Samuel Taylor Coleridge poem "Kubla Khan":

In Xanadu did Kubla Khan
A stately pleasure dome decree

It's a beautiful place, but unreal. (Just like what you see in movies and magazines - no wonder they use the resort for shoots.) And, truth be told, I found most of it sterile, although the food was universally outstanding. It's a place meant for show and status, not for love. It inspires awe, but not affection. So perhaps it's not surprising that the most genuine conversations I had - other than those with the other wonderful and warm finalists, guests, and AA Publishing people - were with the hotel staff. The most genuine moments were when I when I found out that the Assistant Director of Rooms loves the band Lucero as much as I do, and when I correctly identified one of the waiters as being from Bangladesh and was able to tell him about my trip there. 

So I'm glad to be home, back to my messy house and my family. But I enjoyed living the high life for awhile, because opportunities like this don't come along very often.

Me with Grand del Mar President Thomas Voss, 

in the owner's Shelby Cobra roadster.

Kelley