Do Patient Empowerment & Squeamishness Mix?

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This post originally ran a year ago. I dusted it off because I was looking up medical terms online last night and encountered some photos that brought the old squeamishness back. -Jackie

 Patient empowerment is all the rage lately. While I distrust the way the “e” word sometimes verges on ideology, I’m all for learning what’s happening when we get that front row seat to medicine thanks to cancer or another big diagnosis.

But how best to learn if you tend to be medically squeamish? My previous patient experience was limited to an annual visit, with a handful of garden-variety illnesses and the inevitable screening tests required once you hit your 40s and 50s. I’ve never had a problem with those tests, or with needles, but once I learned my breasts were going to be the focus of a cancer adventure I felt a bit queasy.

The thing is, I can’t even stand nipple rings. Back when my husband Bruce and I used to take his Harley to the big bike rally in Sturgis, S.D., I averted my eyes a lot. I found myself doing the same thing now as I loaded up on breast cancer books. How do those DCIS cells act? Sure. An illustration of a nipple floating off into space during a mastectomy? Not so much.

I wanted to know what to expect without getting too much detail, if that makes any sense. So while I learned enough to know I wanted implants instead of tissue replacement surgery for reconstruction, I didn’t read about surgery details, and I couldn’t look at before and after reconstruction photos available online.

I had gone through the mastectomy and first-stage reconstruction before I became curious about things like how my surgeon was able to balance tissue removal and skin preservation during the mastectomy, or how my plastic surgeon was able to recreate a nipple.

Believe it or not, I actually watched him do it, since it only required local anesthetic. If you had asked me five years ago if I wanted to watch myself getting a nipple built, I probably would have yakked on your shoes. But this was my fifth surgery in nine months, so I had gotten used to it. And I’m really glad I watched because it was fascinating.

But that’s me, and it happened over time. You may want every last detail, or you may prefer letting the experience wash over you. And there’s nothing wrong with that. I would recommend learning enough to be able to make an informed treatment choice, and giving yourself enough time to make that choice.  Whether you ever learn what they do with those scalpels or watch them do it is totally up to you.

For the record, nipple rings still gross me out.

3 Words to Banish: Coulda, Woulda, Shoulda

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2011 was full of news on the breast cancer front. One item that resonated with me was discussion of a new gene test that could pinpoint which women would be most likely to benefit from radiation for their ductal carcinoma in situ (DCIS), meaning they could also pinpoint who would benefit from a wait and see approach. By definition, DCIS is confined to the milk ducts. The question is will it mind its own business and stay there, or will it escape and start to spread?

DCIS is so new on the scene that it’s not well understood yet, and doctors would rather see their patients be safe than sorry when it comes to treatment. I went the safe route when I opted for a mastectomy over radiation (trust me, it wasn’t an easy choice, at least for me). So the obvious question is, what if I could have been spared either one? What if mine had been slower moving?

I’ll spare you the details of my decision-making process (they’re in my book, ahem) but I didn’t believe my DCIS was going to stay put, then or now. I realize there’s such a thing as cognitive dissonance (what most of us call sour grapes) but I don’t think that’s the case.

And besides, that’s not the point. Whether my belief system can handle this new information or not, we’re going to see a lot of this with breast cancer or any cancer. We also learned recently that perhaps they don’t need to remove so many lymph nodes to get a good feel for whether cancer has spread. I’m sure women with lymphedema are less than delighted by that news. Such is life. Such is medical progress. Imagine how we’d all feel if we had been operated on before they discovered anesthesia.

The point I’m trying to make is that cancer is no place for “Coulda, woulda, shoulda.” We do the best we can with the information we have at the time. Crystal balls are not retroactive.

Thinking about this also got me thinking about the “three words” concept for the start of the new year. A lot of people, including me, blogged about three words to focus on instead of making resolutions. I’d like to suggest that we also consider three words to banish from our thinking in 2012 and these three are at the top of my list. Not just for how I handled my cancer, but how I live my life.

Cancer can make you wonder what you want to do with this life you’re so lucky to have. Getting older does the same thing. 40 is called the old age of youth and 50 the youth of old age. I crossed over into the youth of old age just over six years ago. I do not intend to get to the end of my life thinking “Coulda, woulda, shoulda.” And I hope you don’t either.

3 Words and a New Year’s Roundup

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I love the idea of a fresh start in the new year. I said in a previous post that it’s the one time of year we’re all like little kids, convincing ourselves that what we feel at this golden inspired moment will last forever and ever. So we make resolutions and invariably fail to keep them. They feel like homework and I gave up on them years ago.

I found some wonderful alternatives this weekend that I want to share with you. Brenda posed a great question at Breast Cancer Sisterhood: Why only focus on the start of the year? Every day that you draw breath offers the chance for a fresh start. I like her thinking.

I also like Dr. Greg Smith’s thinking. A psychiatrist, he spends a lot of time taking patient histories and focusing on the past. His radical idea for the New Year is to focus on the future and what’s possible. No resolutions here. And please read his To Thine Own Self Be True, about finding and honoring your inner voice. You won’t regret it. 

Phil Baumann posted these great thoughts on his New Year’s wish that we look at life as it is right now instead of focusing on the past or future. (His Health Is Social blog is also worth checking out.)

Marie at Journeying Beyond Breast Cancer posted the wonderful An alternative new year’s resolution in which she picked three words to guide her in 2012. She was inspired by Philippa at Feisty Blue Gecko, who has been using the three-word approach to the new year since 2009.

I love this idea so I picked three words to guide me through the year. They are:

Create. Specifically, poetry. I need to write more and better poems. This will require a commitment of both time and stillness, things that have been in short supply. When I took a break recently from what Greg calls the 21st century hustle and bustle, I managed to write a poem. I don’t think it’s a coincidence.

Nurture. I loved it when Marie said the problem with resolutions is their focus on what we don’t like about ourselves, and how we should find something we want to nurture within ourselves this year. This ties in with my first word in that I want to nurture my poetic craft. But I also hope to nurture my relationships and my health, among other things.

Appreciate. Appreciating and nurturing go hand in hand. And along with appreciating the people around me (including me!) I want to remember to appreciate just how very precious life is. As we get older, the losses start piling up. Time with our loved ones is a blessing, and when we run out of time, the memories that sustain us are another kind of blessing.

I wish you many blessings and much joy in the year ahead.

Song of Mary (Christmas poem)

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I mentioned on Twitter and Facebook but neglected to mention here that I’m taking a Christmas break. But I did want to do something, so I’m posting a poem of mine that was published in Volume II of Conclave: A Journal of Character last year. It’s not exactly a Christmas poem, but a friend told me it reminded her of “Mary, Did You Know?” so I figured it’s close enough. Hope everyone reading this has a wonderful Christmas and even better 2012. I’ll be back to blogging about breast cancer and other stuff soon. -Jackie

Song of Mary
Weight of the world
doesn’t begin to describe it.
How badly I wanted to flee
when Gabriel appeared. I dropped to my knees,
longed to keep sinking until the earth
submerged me in its soft dark womb.

Suspicious in the way of all villagers,
the Nazarenes turned away
when I walked by, belly swollen
tight as a skin-covered drum
with its incessant beat called “miracle,”
in which they did not believe.

I could not meet my baby’s gaze
for the longest time.
Every newborn bears the mark of God;
but try looking into an infant’s eyes
and seeing God Himself stare back.

And later, when it ended as it must,
imagine praying for your child, and to Him,
as you witness that awful pain.
And you can do nothing
but agree to accept God’s will
one more time.

And now mothers seek my prayers
for their own children.
Light of the world,
You who take away the sins of the world,
have mercy on all the mothers
who need to believe.

-Jackie Fox

Sounds of the Season

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Disclaimer: I lifted this idea from Debbie Woodbury, who rounded up her favorite Christmas movies on her blog, Where We Go Now, and invited readers to weigh in. I did; I love Christmas movies. I also love Christmas music so I’m sharing some of my favorites, and like Debbie, I invite you to weigh in.

Favorite childhood Christmas music: Hands down, ”The Chipmunk Song” by Alvin and the Chipmunks.Whenever I hear those opening lines “Christmas, Christmas time is near, time for toys and time for cheer,” I’m instantly transported to first grade, in my pajamas, drinking Mom’s homemade hot cocoa.

Favorite ’70s Christmas music: Before it was appropriated by Taco Johns, I always looked forward to hearing ”Feliz Navidad” by Jose Feliciano. (He also did the best-ever cover of “Light My Fire.”) And I did and do love “Merry Christmas, Darling” by the Carpenters. Karen Carpenter had an amazing alto and that song would have been right at home during the Second World War. It’s a classic along the lines of “I’ll Be Home For Christmas.”

Christmas music I wish I’d grown up with: I can’t get enough of “Beautiful Star of Bethlehem.” I discovered it on the two-CD set “Christmas Grass” (that’s bluegrass, not a Cheech and Chong remix). It’s sung by Doyle Lawson and Jamie Dailey, both of whom are with the sublime Doyle Lawson and Quicksilver (whose classic Christmas compilation Merry Christmas From Our House to Your House is now available for download). I always wonder what it would have been like to grow up with this kind of music. I absolutely can’t hear it without singing along. I hope I never hear it in a mall.

Christmas song that made me sit in the vehicle until it finished: I was also smitten the first time I heard “God Rest Ye Merry Gentlemen” by the Barenaked Ladies and Sarah McLachlan. It’s on the compilation Christmas Songs, which also features the hilarious “Polly Anderson’s Christmas Party” by Stuart McLean. It’s storytelling at its best and funniest.

Christmas music I want to hear in its native setting: I love world music, and the NPR compilation World Christmas is one of my favorite Christmas CDs. (So is their Jazz to the World compilation.) “Michaux Veillait” by the Caribbean Jazz Project is a happy, sunny song featuring steel drums, and I keep thinking I really need to be on a warm beach to do it justice. Until I am, it’s a great mental getaway. On that same CD, “Go Tell It On The Mountain” by John Scofield and The Wild Magnolias is guaranteed to get you moving. It’s great music to decorate to.

Newest Christmas favorite: The 25th Day of December by the Staple Singers. They mix up traditionals with originals and give you that same uplifting church feeling Aretha Franklin does.

Christmas favorite turned classic: It’s hard to believe it’s almost 25 years old now, but A Very Special Christmas still can’t be beat. Madonna’s “Santa Baby,” Stevie Nicks’s “Silent Night,” the haunting “Coventry Carol” by Alison Moyet, and the Pretenders singing my all-time favorite song, “Have Yourself a Merry Little Christmas”–it doesn’t get much better than that.

Worst Christmas song ever: Barking dogs “Jingle Bells.”

Musicians I wish would release Christmas music: Rosanne Cash and The Civil Wars. At least The Civil Wars recently released two Christmas songs on iTunes–their original “Tracks in the Snow” and “O come O come Emmanuel.” I hope they follow it up with a full-length effort.

Those are just some of my most- and least-favorites and I would love to hear about yours. The best sound of all is laughter with your family and friends, and I wish that for you this holiday season.

What Are You Grateful For?

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We’re less than a week from celebrating Thanksgiving in the United States, a holiday based on two “g” words–gathering and gratitude. Interestingly,Thanksgiving–not Christmas–is the only holiday where many U.S. workers routinely get two days off from work. And while the day after, the official kickoff of the Christmas shopping season, is capitalism at its best (or worst, depending on how you look at it), the Thanksgiving holiday itself is not measured in shopping days.

So I’m grateful for Thanksgiving itself–that such a holiday still exists in what seems to be an increasingly cynical age.

A few other things I’m grateful for, in no particular order (except the first one!)

  • My husband. Bruce was my champion, caretaker and ombudsman during breast cancer treatment and is one of the best sounding boards out there (when I’m willing to listen. I can be a bit bull-headed.) Forgive the cuss word but I don’t know how else to word this, other than to say he has one of the best bullsh*t detectors I know.
  • My family and friends. I’m so lucky to have so many wonderful, caring, intelligent, funny people in my life. I don’t get to see some of them often enough but they are always in my thoughts.
  • My online community. Ditto what I just said; I’m grateful for the intelligent, passionate, funny people I’ve come to know online. I will never agree with those who think online relationships are somehow less real than offline ones. That’s like saying people who got to know each other primarily through writing letters (remember letters?) had relationships that somehow were less authentic or passionate. Bruce and I conducted much of our courtship via letters while we were engaged to be married. He was stationed on an aircraft carrier in the days before cell phones, texting and tweeting. I still have them in a big cardboard box, 37 years later.
  • Critters. Doesn’t matter if it’s a junco at the bird feeder or a dog with its head hanging out of a car window or a cat sunning on my deck loveseat; critters make me happy. Bruce and I were in the hot tub listening to geese fly over last night and it doesn’t matter how many times I hear it, I’m grateful that wild things are still out there.
  • Life. This is the big one and I can thank breast cancer for that. Women who have been through it are widely divergent on whether cancer is something to be grateful for; I’m one who’s a bit higher on the gratitude meter. I think some of this is semantics; you may not be grateful for cancer itself, but you may have grown and be thankful for that growth, or grateful for the support of family and friends. I’m very lucky mine was caught early (and I should mention how grateful I will always be to my medical team). And early as it was, the experience made me realize how lucky I am just to be here. I used to take that for granted; I don’t any more.

Those are just a few of the things I’m grateful for, and I’m sure you have a gratitude list of your own. If you’re on Twitter, you may have seen Deb Thomas’s series of tweets on the #gratitudealphabet. I loved her Q list in particular; Q being Quiet. Deb said she loves when she can quiet her mind and make space for other great things to happen. I couldn’t agree more.

You don’t have to be on Twitter to try coming up with your own gratitude alphabet.

P.S. If you’re reading this, I’m grateful to you for being here. Thank you.

Turning Pain Into Art

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“We have art in order not to die of the truth.” -Nietzsche

I’m one of those people who thinks art is a necessity, not a luxury. When I went through the obligatory Hermann Hesse/Kahil Gibran phase in high school, I couldn’t get enough of that Persian poem about how if two loaves alone to thee are left, sell one and with the dole buy hyacinths to feed thy soul. While that particular passage is a bit flowery for me now, I still love what it represents.

We count on art to make sense of what defies logic and to say what cannot be said. I The one thing that came as close to explaining the horror as of 9/11 as anything could was Deborah Garrison’s poem “I Saw You Walking.” (If you click the link, it’s the third poem down.) I don’t remember any details of the 24/7 news from that time, but that poem is lodged in my brain.

Lately the thought of pain as muse has been rattling around in my head. I can’t stop thinking about a wonderful Paris Review article I read a couple of months ago. (I don’t want to sound more cultured than I actually am; I found it courtesy of the Zite magazine app on my iPad.) It’s called “Frida’s Corsets,” and it’s about how Mexican artist Frida Kahlo created art from the corsets she had to wear to support her ruined spine after a streetcar accident. It’s a stunning story.

I was somewhat familiar with Frida Kahlo’s art and her chronic pain, but had no idea they were so intimately twined until reading this article. In that pre-cloud era, I wonder how many people outside of her circle of friends and fellow artists even knew what she was doing. And I wonder how she’d be using social media if she were here now.

Today we have artists like Regina Holliday, who has turned her own loss into art focused on patient rights and advocacy, including her Walking Gallery of wearable art. We have photographers like David Jay, who created The Scar Project, an amazing photography gallery and book of young women with breast cancer.

We have journals of literature and healing like the incomparable Bellevue Literary Review,which recently celebrated its 10th anniversary. (Doctor/poet Rafael Campo’s essay on “Illness as Muse” in the 10th anniversary issue is a must read. Trust me on that.) We have newly minted ezines like Narrative Nipple, which focuses on breast cancer.

I admire artists of all kinds. But there’s a special place in my heart for the ones who can tap into personal or collective pain and open a window to what’s not easily understood or explained. I would argue that we need them every bit as much as we need patient advocates. Turning pain into art is the essence of empowerment.

Our Cancer, Ourselves

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Forty years ago this month, Our Bodies, Ourselves hit bookstores. The 40th anniversary edition recently came out, and last night NBC Nightly News interviewed women ranging from author and screenwriter Nora Ephron to famed breast surgeon, author and Army of Women founder Dr. Susan Love.

If you weren’t around then, it’s hard to understand just how groundbreaking this book was. We were just starting to talk openly about things like reproductive health and birth control, and it provided a road map. It’s been published in 25 languages, and Time magazine named it one of the most influential 100 non-fiction books. An updated 40th anniversary edition was recently published (and it’s available at a 70 percent discount to health clinics and non-profits.)

I was 15 when the original version was published. I never thought it would be around for 40 years, or that I would be purchasing a copy of Our Bodies, Ourselves: Menopause to try to make sense of that next female frontier.

The book providing the first real road map for breast cancer was the still-excellent First, You Cry by Betty Rollin, which came out five years later. Although the fall crop of breast cancer books has become as perennial as pumpkin harvests, I think First, You Cry is still the gold standard. Not only is it an unflinching look at the roller coaster of emotions she experienced, it also provides a look into how much medicine has changed. I spent the night in a short-stay unit after my mastectomy; she was in the hospital for a week after hers.

When I look back on what’s changed, I’m glad women’s health issues and cancer are no longer in the shadows. I’m glad we educate ourselves and share our stories with each other and stand up for ourselves as patients and as women. I’m grateful for social media and the community I’ve become a part of.

But when I look at how our society has changed in 40 years, it seems that while there is no shortage of people who are willing to talk, fewer are willing to really listen. A lot of today’s political discourse seems to have hardened into ideology. I see a bit of that in some health discussions too, mainly around patient empowerment. And I find it interesting that patient empowerment is often equated with feminism. At this stage of my life, I’ve become wary of “isms.”

Would I go back to the way things were then? Absolutely not. I’d just like to see a shift to more listening and respectful disagreement in our public discourse.

The Kindness of Strangers

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“No act of kindness, however small, is ever wasted.” -Aesop

I see my oncologist for my twice-yearly checkup tomorrow, and while my visits have been blissfully mundane over the last three years, this time I actually have a list of questions and a couple of concerns over the lab results from my latest physical. It’s probably nothing, but once you’ve had cancer you can’t help but wonder which “nothing” is actually the edge of trouble’s long shadow. My family doctor sees no cause for alarm, although she promised to keep an eye on things and outlined a course of action that sounds reasonable. I agree, but told her I’m also going to share my lab work with and relay our plan to my oncologist.

I serve on the citizens’ advisory committee of our community cancer clinical trials program, and I’ve come to know its program director, an oncology nurse. We were e-mailing each other today about an event we’re having next month, and she wished me well on my appointment. When I shared my fears with her, she told me they’re normal for anyone who’s been through cancer. She said telling my oncologist is a good move. Then she told me to enjoy my upcoming vacation in Napa, get some sun on my face and relax with a nice glass of wine because I deserve it.

Her e-mail made me flash back to the first e-mail I ever got from her. I was fresh from a horrible consult with an oncologist who recommended a mastectomy after 10 minutes with me. Oh, and I should really consider an MRI, in case I needed a bilateral. Needless to say, I was freaked out.

I was so high on the freak-o-meter that a friend of mine asked Mary Beth, the program director, to get in touch with me. He had kept recommending the oncologist who is now my doctor, and I kept saying no until this awful consult. My oncologist is a principal investigator with the program Mary Beth heads up and she knows him well. She e-mailed me to let me know my soon-to-be oncologist was both smart and nice. She also told me that having cancer in both breasts is extremely rare. This wonderful woman talked me down, and she didn’t even know me. Her kindness radiated through that e-mail.

Mary Beth wasn’t my only encounter with kindness–far from it. I’ve talked before about the kind woman who rescued me in the waiting room the day I had my first-ever surgery. There was the young woman with the insurance company who helped me sort through a billing issue, then paused and said, “How are you?” like she really meant it, and shared her own family history. There was my beyond-awesome surgeon’s equally beyond-awesome receptionist. My journey had many such moments of kindness and I’m sure yours did too.

Today, I see this kindness in social media as well. I see it in the #bcsm tweetchat and the women who worry about each other if they’re offline for too long. It’s nice to know that kindness is alive and well. I believe it’s true that no act of kindness is ever wasted. And you never know how long your kind gesture will stay with someone. It might be for far longer than you think.

Tangled Up In Pink

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I’ve always loved fall, particularly October, even though in recent years it’s become tinged with sadness. My mom died on October 1, 2003, and my dad’s birthday was October 13; this year, he would have been 80. But those bittersweet feelings seem in perfect keeping with fall. The glory of the brilliant gold and red leaves lies in knowing they can’t last. 

But now, thanks to the pink retail holiday that breast cancer has become, at least in the United States, the black cat and orange pumpkin of Halloween, the crisp blue sky and gold leaves of a perfect fall day, have all been crowded out by pink.

The crowding isn’t just visual. When you blog about breast cancer, October is a land mine just waiting to be stepped on. Do you jump on the pink bandwagon and blog about breast cancer awareness and support, as if it’s the one time of year you can talk about it? Or you resist, lamenting the avalanche of pink products and specials and events that have hijacked the month?

I knew this had become an issue when another blogger asked me if I had any big plans for October blog posts. The fact we were even having a discussion about this made me realize just how much Pinktober has gotten under our collective skin. LIke the pink ribbon itself, it’s a loaded symbol.

The truth is, I don’t have that much to say about Pinktober other than I’m already tired of it and don’t like feeling (self-induced) pressure to write about it. Instead, I’m going to give you a recommended reading list of the best things I’ve read so far.

I mentioned that the pink onslaught seems to be most intense in the United States. Read this wonderful post, “Where There Is No Pink Pandemic,” by Philippa Ramsden at Feisty Blue Gecko, to see how differently breast cancer is viewed in the rest of the world.

One of the best posts I’ve read about what a loaded symbol the pink ribbon has become comes from Jody Schoger at the wonderful Women with Cancer. In her most recent post, Upending Pink, she explains why October has made her uneasy for a long time, and includes some great links to recent news coverage of all things pink. But what touched me even more was her previous post, Left Behind, in which she talked about how the politics of the pink ribbon intruded on something as private as a funeral. (I’ve had similar mixed feelings when accosted by a basket of pink ribbons at a funeral, as I’m sure many of us have.)

One of the best and most consistent critics of pink ribbon culture is Gayle Sulik, who wrote the book Pink Ribbon Blues. She will be blogging 30 Days of Breast Cancer Awareness and her first installment, the Inspirational vs. the Actual, looks great.

Rachel May at the Cancer Culture Chronicles sums up what’s wrong with the typical approach to awareness in Breast Cancer Awareness Jersey Shore Style! All outcomes are good, buying a pink pashmina passes for awareness, and there is nothing remotely related to her experience with metastatic cancer. Apparently, her particular “brand” of cancer is a tough sell. It’s a bit problematic figuring out which shade of lipstick works best with thrush.  

Debbie Woodbury at Where We Go Now used to like pink, and wants us to reclaim its power this October.

You’ll find plenty of thought-provoking reads in these and many other excellent blogs. And here’s wishing all of us a fast month. -Jackie Fox