Joy Journal 1: The Beach

It’s taken me a while to get to this project, which I’m calling my Joy Journal. The idea was inspired by an article, “Crafting Memory Cards,” in the July/August 2016 issue of Cloth-Paper-Scissors. Written by Susie Henderson, the article describes a set of “altered cards” she made to “curate [her] collection of losses.” Henderson used a set of playing cards that she altered with paint, fabric, charms, and other items to commemorate those she grieves. She then made a pocket journal to hold the cards.

Sample of Henderson's altered cards
One of Henderson’s altered cards

I decided to adapt Henderson’s project in a different direction. Though I am certainly facing my fair share of losses (and may at some point decide to commemorate those as well), I feel like it’s easy right now to get lost in the losses, and that it might be helpful to me to remind myself, instead, of all the things that bring me joy. I’ve been slow starting on this project, but I was spurred on to make progress this past week by a combination of events: my disappointment in the election, scheduling a definitive surgery date, and a consultation with my reconstructive surgeon, which just made the whole mastectomy thing that much more real. I needed a little joy.

Original title page of Francis' book
Original title page of Francis’ book

I’d already decided to use an altered book as my container, since I had the perfect one practically volunteer for the job. Back in the summer I’d ordered physician Gavin Francis’s Adventures in Human Being, subtitled “A Grand Tour from the Cranium to the Calcaneum.” Francis weaves science, philosophy, and literature with stories from his own experiences with patients to create a kind of “cartography” of the human body. The first copy sent to me was missing pages 19-52. I was sent an intact replacement copy, so I had the extra, incomplete book just sitting around. The title called out to be tweaked and re-purposed.

I looked up a couple YouTube tutorials on prepping a book for alteration, removed pages as directed to make space for adding my own journaling, and it was ready whenever I was. I gathered up paint, glue, washi tape, playing cards, and various other materials to see where they led me.

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Gathering tools and supplies

It will not surprise anyone who knows or follows me that the first entry in my Joy Journal is The Beach.

Since I used an altered book as the container, my approach is a little different than Henderson’s. I focused as much on the book pages themselves as on the altered card.

I enjoyed letting the entry emerge organically and metamorphose over the course of a few days. I don’t claim to be a professional artist, but I think the entry captures much of what I love about the sea: sun and shells, blue waves and happy memories. I included photos from a couple of my beach trips, along with shells, an origami sun, and some of my favorite beach elements and colors. In case you can’t tell, that’s supposed to be a ghost crab in the lower right corner of the card! I love watching them skitter down the beach, and Steve and I once spent a lovely afternoon sitting in our beach chairs on Ocracoke Island, feeding the ghost crabs around us bits of pears and cheese. I have also known them to enjoy barbecue potato chips.

I worked a bit on the title page of the journal, too, as well as altering the book spine to reflect the new journal title. I still have some blank “front matter” pages to create, but I wanted to focus on getting my Beach entry done first. I’ll return to those elements later.

This project did bring me a smile. Wishing you a little extra joy this week, too!

Thinking About Pink

October, as most are likely aware, is Breast Cancer Awareness Month. My husband Steve has been doing some traveling lately, and he’s sent back a few reports on the awareness efforts he’s encountered on the road. Yesterday all the flight attendants on his trip sported pink ribbons, and the in-flight magazine had a feature story. A couple of weeks ago, he dined at a restaurant that served up pink tortilla chips. Not that travel is required to see plenty of pink during October: I previously noted the Ulta ad that landed in my mailbox, and every time I turn on the television, I find a public service announcement for a tie or scarf I can purchase to help the cause.

think-pink-cafe-000-page-1Public support and awareness is a good thing, of course. Our local mall recently hosted a “Positively Pink Parade,” raising funds for the Every Woman’s Life program, which provides free mammograms to low-income, uninsured, and underinsured women in our area. Personally, I had the opportunity to attend a retreat for breast cancer survivors sponsored by our local breast care center. It was a powerful experience, both uplifting and draining, physically and emotionally. We interacted with other survivors, created healing art, asked questions of a panel of doctors. It was humbling and inspiring to hear the stories and witness the resilience of the women gathered there, several of whom referred to our shared experience as a kind of sisterhood.

Yet I find myself resisting the proliferation of pink, the idea that with my diagnosis I’ve joined a club of sorts, one that comes ready-made with a club symbol, theme color, purchasable bling, and annual rituals. Maybe all of it takes me uncomfortably back to my visit to the wedding book aisle as a forty-something first-time bride, when I felt like I’d been transported into Barbie- and baby-land, all pink and purple book covers and unrelentingly cutesy fonts. I mean, wedding planning is something grown women do, ideally, not tweens. Similarly, I find much of the imagery of Breast Cancer Awareness Month cloying and cutesifying, when not disturbingly sexualized. I’ve heard this phenomenon referred to as “pink-washing,” and while some women find solace there, many others experience the explosion of pretty tchotchkes and slogans like “Save the ta-tas” as more trivializing than empowering. At times the approach seems almost celebratory.

There’s nothing fun about having breast cancer. At this moment in my journey, I am faced with deciding whether to have only one or both of my breasts surgically removed. I am about to undergo genetic testing to find out if my ovaries might need to follow. There’s nothing cute about contemplating reconstruction options. There’s nothing sexy about the prospect of losing my nipples, all sensation in my breasts. There is not enough pink tulle on the planet to make any of this palatable or easy. I will not need souvenirs manufactured in China: the scars I will come to bear will be pink ribbon reminder enough.

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I like pink. I even own a pink tulle skirt—purchased long before my diagnosis. To me, it says “ballerina,” not “breast cancer.” The only statement it makes is a style statement, and I’d like to keep it that way.

This is not a club I would have chosen to join.

Given a choice, I’m guessing most people wouldn’t. (I think of Groucho Marx, who reputedly once sent a wire stating, “Please accept my resignation. I don’t care to belong to any club that will have me as a member.”) I’m not a joiner by nature, never have been, so some of my resistance no doubt stems thence. My husband Steve compared this process to graduate school. Deep bonds are forged there—often through some trial and misery—that remain for a lifetime, but once you graduate, you’re no longer a student, and you move on, leave that identity behind. I am a person who lives where I am. I don’t wax nostalgic about high school, or grad school, or my first job or home. I turn my attention to the people and places of this moment.

I expect my experience with cancer to be similar. For now, a significant part of my identity is “cancer patient,” but (god willing) that will not always be true. And I will, for the rest of my life (god willing), be a cancer survivor. But I am and will also be a writer, a teacher, a wife, an artist, a daughter, a friend. I will always be of a double mind about having had this disease. Cancer is teaching me important lessons about how to pay more attention to what really matters, how to let go of what doesn’t. But if I’m honest, given the option to go back and not have cancer, I can’t say I’d embrace it, even if it meant losing a lesson or two.

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Let me say again: public support and awareness are unequivocally good. If a pink parade ensures a woman gets the mammogram that saves her life, that parade is worth every ounce of its pink bling. If 5,000 people buy beaded bracelets at Ulta, and that money goes to ground-breaking research, those bracelets are worth their weight in gold.

Yet I wonder how successful these events are in terms of really educating people. How many people know that most women diagnosed with breast cancer do not have a family history? How many people know that there are a number of different types of breast cancer, and each has different treatment protocols? How many know that, even with those differences, surgery is still almost always the standard bearer? How many people understand that even once you are “cancer-free,” there is a waiting period, a wondering period, when recurrence is a concern, up to 3, 5, even 10 years? Research is advancing rapidly in many ways; doctors can target treatment so much more effectively than even five years ago. Yet the primary cures—mastectomy, chemotherapy, radiation—remain pretty darn toxic and brutal. When will that change?

Given the prominence of pink in October, I find it hard to imagine that people aren’t “aware” of breast cancer in a larger sense. It’s other cancers that often get short shrift. My husband is a testicular cancer survivor; a dear friend is a survivor of intestinal cancer; a Facebook friend from high school has just seen her daughter treated for brain cancer. These forms of cancer don’t get the press that breast cancer does, but they cause just as much pain and suffering. All cancers hurt. Maybe we can pull back a bit on the pink and invest in understanding causes and treatments that work while doing as little harm as possible.

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So if the bling is not your thing, what can you do? From the front lines, here are my recommendations:

  • Ladies (gents, too, especially if you have a family cancer history), do your monthly self-exams. Get your mammogram. Ask if your facility has 3-D mammography. If you are informed (as, by law, you must be in many states) that you have “dense breast tissue,” ask your doctor what your rights are to a follow-up ultrasound, paid for by insurance. If you have a history of family cancer, you might want to ask about genetic testing and/or additional screening: those with established risk factors have access to more options.
  • Donate to research—and do your homework first. From my explorations thus far, I recommend Stand Up to Cancer, the American Cancer Society, and the Breast Cancer Research Foundation.
  • Alternately, focus on local initiatives and care centers, or directly support individual families and patients you know. A colleague of mine organized a Meal Train for us during chemotherapy, and it was an absolute godsend. A cozy blanket to cuddle under and Lifesavers to suck on during the saline wash while in the chemo chair will, I can attest, be deeply appreciated.

Cancer sucks. Let’s kick its butt together.

Do Good to Feel Good: Plant a Tree

Last weekend, Steve and I took advantage of a beautiful fall afternoon (and  little extra energy) and went for a short walk on one of the trails in Mill Mountain Park, a forested space we are lucky to have just minutes from our home. Our walk was more stroll than hike, and it included a peaceful interlude resting on a bench halfway through. In a sense, we were doing what the Japanese call “forest bathing” (shinrin-yoku), immersing ourselves in the woods for a while, which has been shown to have powerful physical and psychological benefits.

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As Steve noted in his recent guest blog on Taxol, the chemotherapy drug I am currently taking, trees offer us and our world so many benefits. So, for this installment of doing good to feel good: consider planting a tree!

Plant a Tree

Trees help remove pollution from the atmosphere, clean our water, cool the earth, provide habitat to wildlife, and even reduce crime (see the National Arbor Day website for more detail). Trees are, of course, also a source of great beauty.

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And research has shown that walking in the forest, breathing in the phyto-chemicals released by trees, can help fight cancer. In honor and celebration of today’s last chemotherapy treatment, I want to say thanks to the trees!

So, do good to feel good: visit the Arbor Day website to explore what trees flourish in your area, and what might be successfully planted this time of year. Consider planting a tree sapling in your yard today, or if that isn’t feasible, consider support planting trees in another area of the world.

Trees are good for the planet, and good for you!

TreeHug


∼Science–and common sense–tells us that doing something good for others is good for us: it raises our endorphins, boosts our self-esteem, gives us an emotional lift. Doing good is good for others and for healing ourselves. In this feature, I occasionally suggest a small action each of us can take to make the world a better place. I will if you will!∼

Be Kind. Always.

Not too long after I was diagnosed with breast cancer, a meme appeared in my Facebook feed: “Everyone you meet is fighting a battle you know nothing about. Be Kind. Always.”

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I had seen this piece of wisdom before, but prior to my current struggle, it was essentially an abstraction. I’ve quickly come to understand it at a much more visceral level. You never really know what’s going on inside another person. So be kind, be compassionate.

Because you never really know.

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 A parable of sorts.

In between the date of receiving my cancer diagnosis and going broadly public with it, I shared a post on my Facebook page that listed which members of congress had voted to allow those on the Terrorist Watch List to buy assault rifles. Though headlined with the clear stance “Vote the nay-voters out,” the list itself was pure information: who voted for what. Immediately a Facebook “friend”—John, someone I barely remember from high school—responded with disagreement, and a lively thread largely populated by three additional friends who supported the initial stance ensued.

I’d shared the post the same morning I had my first appointment with the breast surgeon. There I learned that my cancer was Stage 3 with lymph node involvement, that I would need chemotherapy before surgery, that further tests were required to verify there was no metastasis. It was heavy news, not what we’d hoped for, and in that moment the second amendment quickly shifted pretty far down my list of concerns.

In the thread, John had moved fast to dismissive comments peppered with things like “STFU,” “you don’t have a clue,” and broad insults to all liberals. I have no patience for incivility of that sort on a good day, and the rapidly rising snark factor upset me. After a few more snipes and insults, I wrote the following on the thread:

“John, enough. I am not having the best day ever and this stuff is not helping. Thanks all.

And just a note for the future. I don’t post things on my page as an invitation for other people to shoot them down and argue with me. I post them because I believe in them. You don’t have to agree, but neither do you have to try to start an argument. My mind is unlikely to be changed, and I don’t need that kind of negativity in my life.”

I pointed out I’d never once picked an argument deliberately on his page, although he frequently leapt at the chance to tell me how wrong I was in my posts. I asked him to stop, to show some restraint, as nicely as I could.

His response: “Spoken like a true liberal. Only post if you agree. No opposing arguments. Got it.”

And then he posted this (completely unsourced, terrible visual-quality) graphic, on causes of death in the USA:

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The number three cause of death listed: cancer.

Everyone you meet is fighting a battle you know nothing about. Be kind. Always.

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Since my own diagnosis, I’ve had a friend suffer from a serious spider bite. Another saw his sister diagnosed with cancer. Two friends have seen their beloved dogs through serious surgeries and biopsies. Another, an avid runner, is laid up for a few months after surgery to repair ruptured tendons and ligaments. Still another tragically lost her son to suicide. A former student faces abdominal surgery for ongoing health issues, a dear friend has heart surgery coming up soon. The aging parents of several friends have been in and out of the hospital multiple times, and one young woman lost her mother. Another girlfriend has feared loss of a job. A twenty-two-year-old model I’ve worked with continues his battle against leukemia. Two friends have disclosed serious depression. And countless people now face recovering from the damages of Hurricane Matthew.

And these are just some of the battles I do know about.

What of all the others? The man in front of me in line at the grocery store? The student sitting quietly in the back of the coffee shop? The neighbor loading a box into her car? The commenter on the online thread?

Since my own diagnosis, I have been the recipient of depths and breadths of kindness that I do not know how I will ever repay. Notes, cards, music, books, food, flowers, yoga, housecleaning, hugs, prayers, gatherings of support, so so many words of encouragement. I have been moved to tears by the incredible love and generosity of the people in this world.

That is the world I want to live in, to help create.

Everyone you meet is fighting a battle you know nothing about.

Be kind.

Always.

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Do Good to Feel Good: Thank Someone Who Made a Difference

Science–and common sense–tells us that doing something good for others is good for us: it raises our endorphins, boosts our self-esteem, gives us an emotional lift. Doing good is good for others and for healing ourselves.

So, in this feature, I will occasionally suggest a small action each of us can take to make the world a better place. I will if you will!

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Say Thanks to Someone Who Made a Difference

Is there someone in your past or present life–perhaps a teacher, a caregiver, a mentor–who made a real difference to you, personally or professionally, and about whom you’ve sometimes thought: I should tell ______ what a difference s/he made?

Now’s your chance! I recommend writing a letter, card, or email (or go public with a blog or even a Facebook post!), so the recipient can hang on to your thanks and revisit the good feeling it will no doubt elicit. But you know your recipient best, and a call or other intentional communication will also surely be much appreciated.

Feel free to post your intentions in a comment below, if you are so inclined.

Do good to feel good!