No rest for cancer. Rest in peace, Pat Steer.

19 Thursday Jul 2012

Posted by Editor in Awesome Women, Blogging, Breast Cancer Treatment, Health Activist Writer's Challenge 2013, Language matters, Memory, Ordinary Things, Social Media

≈ 31 Comments

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#HAWMC2013 Day 26, Advocacy, Bucket List, bucketlist, California, Cancer, ColoRectal Cancer, Conditions and Diseases, Gastrointestinal, Health, Pat Steer, SLO Farmer's Markets, Tamoxifen, Tom Cruise, United States, vacation from cancer

I am a creature of habit. I count on routines and rituals to know that all is well in the world. Like breakfast – always the same – poached egg, toast, berries of some sort, an orange. Coffee from my favorite cup. Whenever I wave goodbye to my husband, three things always happen: he’ll blow a kiss, flash a peace sign, and watch until I disappear from sight. Predictably perfect. Let the day begin.

On vacation, one set of routines is temporarily traded for another, our days devoid of hot weather and work, traffic and junkmail, air-conditioned cars and offices, of medical appointments and more to schedule. On the coast, living is easier and outside. Living happens without looking at the time. Days eventually begin with idle conversations over good food at Good Tides where breakfast is served all day and a scan of the local newspaper for news about people we don’t know. The only schedule of any import is that of the local Farmer’s Markets so my husband can make his annual pilgrimage to Atascadero for his favorite avocados. On an afternoon, I might be sprawled on a beach ostensibly reading a book I’ve been meaning to read since 1997 but in fact staring over the pages and out at the ocean, delighted to realize the shimmer atop the rocks is the glistening pelts of six seals basking in the sun at low tide.

This year’s vacation is different in that it is my first with cancer, qualifying it as some sort of milestone. Seven months ago, I would not have envisioned our little trio ensconsed by a bay in a Bed and Breakfast the decor of which reminds me of a little house. On a prairie. Oh, it is quaint. Quiet too, with a cosy fireplace and a view of the water that inspires the kinds of daydreams that make time go by too quickly. Cancer does not enter my thoughts too often – you couldn’t have paid me to think about it during that moment when I discovered the seals. Still, I can always count on cancer to be there when I’m not looking for it. When I realized I had forgotten to refill a Tamoxifen prescription, I needlessly panicked. It was so simple. All I had to do was go to the pharmacy (no longer a nameless vacationer looking for sunscreen) but as a cancer patient whose information is in their computer, and if they’ll just check, they’ll see I need more Tamoxifen. The young pharmacist was very kind as she asked me questions about whether I had any questions about the medication. (She could not know I have countless questions about Tamoxifen and what I think it’s doing to me, but I’m on vacation.) She was very earnest and had that prescription filled in less than fifteen minutes. I remember wondering if she felt something like sympathy for me, understanding better than I perhaps that cancer does not take a vacation.

I don’t know if I was thinking about any of this as I scrolled through my Twitter feed yesterday, but in between Tweets about Syrian President Bashar al-Assad and Tom Cruise’s divorce, I noticed from Elizabeth Whittington, this:“What a loss. Heartfelt condolences to u all @FightCRC: It is with great sadness we report Pat Steer passed away yesterday.” I do not know Elizabeth Whittington, nor did I know Pat Steer. I was not familiar with the acronym CRC. I know more today.

Last night, after the kind of sunset that brings out lots of people with cameras, I found myself thinking about Pat Steer. I went back through the day’s tweets and eventually found Elizabeth’s condolences. Then I found Pat’s blog and read about her. In her own words. She was a dog trainer, a writer, and a really good cook who loved exploring Syracuse to find new foods. She had been diagnosed with Stage IV rectal cancer in 2004, stopped active treatment on March 28 2012, and on May 7, 2012, she wrote a guest post No More Room in the Bucket for the Fight ColoRectal Cancer website. Her friend, Janet, had wondered if there were still some unfinished “bucket list” activities that might make Pat’s wishes come true. I suspect Janet expected a request for something grander, but Pat’s wish was only for enough strength and mobility to go upstairs and do a load of laundry by herself. Strength and mobility.

Like most of us, I imagine, Pat had not created a formal bucket list; she had long-term goals that were not written down but fulfilled nonetheless – paying off credit card debt and a mortgage, retiring from corporate life at 55, training her dogs, experiencing the vastness of North America by train. Following her diagnosis, she traveled to New York for consultations and treatments, and she took advantage of the Amtrak points she earned. From coast to coast on sleeper train, Pat took her time to savor America and Canada and visited relatives in various states along the way. She described the travel as leisurely and enjoyed creating wish-list routes for the future. She was soon all set for another cross-country trip in 2011, to Denver for the English Cocker Spaniel Club of America national specialty, but because Amtrak prohibits dogs, she would forgo the train and drive in her Jeep. Everything was coming together perfectly for a dream trip, until one of those consultations in New York revealed an inoperable recurrence of her stage IV rectal cancer. Now, she had tumors in her lung and in her lower spine. Her oncologist confirmed metastatic cancer in her spine and hipbones, and a weekly chemotherapy regimen abruptly ended those plans for a six week cross-country road trip. She cursed chemo for ruining her summer vacation, but found consolation in learning that the tumors were shrinking. Her strength was returning, so much so that she felt strong enough to travel to New York for treatments. Her routines of writing and lunches with friends were once again part of her life. And, she had all those Amtrak rewards to use later.

Cancer’s ironies are infinitely cruel. Throughout her treatment and in her advocacy work, Pat had always cautioned other patients to be prepared for the speed at which things can change with Stage 1V colorectal cancer. She was prepared in all the “official” ways with a will and an advanced directive; her family knew her wishes. But she was wholly unprepared for the rapidity of cancer’s final, painful assaults on her own body. In No More Room in the Bucket she writes that it took not even one month for her “to morph from full-time functional adult who could drive herself around to full-time cancer patient who is mostly bedridden.”

I was done.

Pain control became paramount, and in consultation with her team, Pat decided to stop treatment. She blogged about it too, at Life out Loud: Surviving Cancer Living Life where I found out she had, like so many of us, been held up by virtual connections and the sheer kindness of “strangers” including a woman she had never met who created a virtual tour of Seville, Spain for her, complete with well-wishes from Spanish waiters.

So as I go about my vacation today and all the simple things that make it perfect, I will be thinking of Pat Steer and her bucket list. I hope you will too:

“There is no more room in the bucket for big dreams like cross-country train trips. I feel a pang watching tv shows set in NYC, knowing that I’ll likely never visit my favorite city again. It aches to see puppies and kittens and know I’ll never own another one. I’ve never tasted foie gras, or truffles, or uni. I never got to visit the Food Network. I’ll never meet my friend Shawn in person or visit her in Seville, Spain.

And perhaps the hardest thing – I ran out of health and activity before I ran out of treatment options. My body quit on me before my brain has … In the greatest cancer race, hanging on until the next new thing becomes available, I didn’t quite make it to the finish line after eight years of trying.

Simple things are my goals now – and simple things are what I miss most. I miss spontaneous restaurant lunches with my friends. I miss being able to shop for fresh food every other day. I miss being strong enough to walk outside. I miss my dog, Madison, who I sent back to Virginia to be with her co-owner because I’m no longer healthy enough to care for her.

It’s frustrating to have to ask someone else to do laundry because I can’t safely climb the stairs to get it done. Knowing that I may never be independently mobile again – that’s what I miss the most in this phase of non-treatment. More strength and mobility – that’s what’s on my bucket list these days.

That and, well, I decided that at the very least, I could take care of a little desktop aquarium and a betta. Petsmart is delivering the aquarium, filter, gravel and betta food tomorrow. A friend has already agreed to pick out my new fish…and maybe my sister and brother-in-law will take the tank when the time comes. Until then, it’s a small goal that I can reach, one that will remind me every day of brightness, and color, and movement – even when I can’t always accomplish those things.”

Rest in Peace, Pat Steer

good with their hands

31 Thursday May 2012

Posted by Editor in Art, Artisans, Awesome Women, Belfast, Crafts, Feminism, Memoir, Memoir, Mother Daughter Relationship, Mother's Day, Northern Ireland, Ordinary Things, Seamus Heaney, Soundtracks of our Lives, Themes of Childhood, Themes of childhood

≈ 38 Comments

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artisan, backing books, brown paper packages tied up with string, Castledawson, Dale Chihuly, good with their hands, Memoir, mother daughter relationship, my mother, rural Derry, Rust Belt, Seamus Heaney

artisan

Pronunciation:/ˌɑːtɪˈzan, ˈɑːtɪzan/

NOUN

a worker in a skilled trade, especially one that involves making things by hand:street markets where local artisans display handwoven textiles, painted ceramics, and leather goods

It never fails. When a brown paper package tied up with string arrives at my door, I begin ruminating on old words about old ways of living that are creeping back into our lexicon – “vintage,” “organic,” or “artisanal.” Redolent of superior quality, the “master artisan” has always conjured the likes of Antonio Stradivari or in more recent times, the brilliant Dale Chihuly, whose stunning glasswork appears to grow right next to cacti in the Desert Botanical Garden, transforming it forever for me. It also brings to mind the master cobbler I first encountered in a shop in Florence, Italy. I can still see him, bent over a supple piece of leather, hands moving deftly as he shaped it in the form of a shoe that would invariably grace the foot of a tourist.

In retrospect, he was not unlike the men and women whose artisanal handiwork imbued the rural County Derry where my parents grew up. As a matter of economic necessity, they were “good with their hands” and frugal too. Thus their farming, knitting, dress-making, baking, turf-cutting, and roof-thatching was shaped by and shaped the villages and towns in which they lived.The poetry of Seamus Heaney is peopled with such artisans as the solitary, quiet Thatcher.

Then fixed the ladder, laid out well honed blades
And snipped at straw and sharpened ends of rods
That, bent in two, made a white-pronged staple
For pinning down his world, handful by handful.

Couchant for days on sods above rafters
He shaved and flushed the butts, stitched all together
Into a sloped honeycomb, a stubble patch,
And left them gaping at his Midas touch.

Somewhere in Heaney’s notion of “pinning down” one’s world, a handful at a time, art and living surely converge.

Far away from Derry, in a world that might not be so different after all, the Rust Belt of the United States is the backdrop for Carlo Rotelli’s Good With Their Hands: Boxers, Bluesmen, and Other Characters from the Rust Belt. Within it, he explores the symbiotic relationship between the artistry and the environments of an unlikely lineup including bluesman Buddy Guy, pugilist, Liz McGonigal, and former New York city cop turned movie-producer, Sonny Grosso. Like the turf-cutter, the thatcher, and the blacksmith of Heaney’s poetry, these too have honed the “deceptively unsimple virtue” of being good with their hands. Their handiwork is forever inextricably bound to their worlds.

For years, my mother has been sending me brown paper packages tied up with string – boxes filled with Antrim Guardian newspaper clippings about people I used to know but might not remember, Cadbury’s chocolate for my daughter, the obligatory three or four packets of Tayto cheese and onion, Barrys Teabags, and always something for me to wear. (This last is typically something for which she paid entirely too much, and something I really don’t need, but she always dismisses me with a “it’s just-something-to-throw-on”).

My husband was always been bemused by the brown wrapping paper and the string, but what he never realized (and my mother may not either) is that, by all accounts, consumer demand for her type of handiwork has gone rather mainstream. At any moment, we are but a few clicks away from artisanal gift-wrapping, jam-making or the knitting of very complicated Aaran sweaters, all of which she has practiced and perfected since childhood. I have knit only twice in my life. The first time, I had to produce a pair of slippers for Domestic Science class. Seriously. I remember it took forever to cast purple stitches on fat grey knitting needles, and then there was the daily grind of “knit one, purl one,” until those ugly slippers were finished. My mother intervened of course, but her neat rows of stitches were too obviously different from mine, and she didn’t want me to get in trouble. Which I imagine I did. I have no idea what would have possessed me to undertake knitting a second time, but years later, I knit a sweater (mostly by myself). So impressed with my handiwork, I even wore it out a time or two. Alas, it literally fell by the wayside as we made our way to Slane Castle on the warm July afternoon of Bruce Springsteen’s Irish debut. That was the end of the knitting for me, but my mother only grew more skilled, taking on increasingly complex patterns, her needles clicking ever more rapidly it seemed.

My mother’s first job was in Crawford’s shop in Castledawson, and that is where she learned, among other things, how to wrap a tidy parcel in brown paper and string. As she had learned to bake and sew by watching my grandmother, so she watched Jim Crawford skillfully wrap parcels for the customers. Soon she was expertly preparing packages of sweets and biscuits for those who wanted to send a taste of home to relatives across the water, Mrs. O’Connor, whose daughter was in England; Jim Crawford himself had devised a way to tie newspapers with string so they could be easily mailed to relatives far away in Australia. I imagine one such newspaper will be making its way to me soon – my mother believes she still has the knack for it. She is quick to remind me that all this wrapping and knot-tying was long before there was any such thing as Sellotape (Scotch Tape) so sometimes she would use a seal wax over the knotted string.

Years later, when my mother was home with us, one of her favorite jobs was “backing books.” By the first day of school in September, she had saved brown wrapping paper for this special task. Anyone from my part of the world will readily acknowledge that our teachers were very particular about the way our books were backed. There was definitely an art to it, and so naturally it fell under my mother’s bailiwick. She could barely wait for September when my brother and I would get our new school books for the year. I can still see her waiting in our kitchen in the house on the Dublin Road, brown paper and scissors ready. Each book she placed carefully in the middle of a sheet of brown paper, and with a few quick snips, folds, and tucks, she had it covered, ready for us to write our names on the front. I remember one September, because my mother was ill and in the hospital, I had taken it upon myself to back my new history textbook. Of course I couldn’t do it right. Like so many things, this was something my mother had made look so easy, but unlike my mother I had not learned by watching. It was impossible for me to get the brown paper neatly under the spine at both ends, so I gave up and went to school, book un-backed. For my sins, I was subjected to a memorably sarcastic tirade from a teacher who clearly cared not about the fact that my mother lay in the Royal Victoria Hospital in Belfast. She may as well have been on the other side of the world in those moments. Over thirty five years later, I can still feel the flush of embarrassment on my face. I have never forgotten or forgiven his lack of sensitivity. I am sad to report that I was reminded of it once more, just five months ago when a teacher was inexcusably cruel to my daughter – in front of her classmates and in spite of knowing that while he casually broke her spirit, her mother was recovering from cancer surgery.
Perhaps being good with one’s hands is somehow connected to being in good hands. Handled with care. A hand-wrapped parcel from Crawford’s shop was done right and with great care. There was heart and craft in it.