Komen Off The Rails

Posted on by
25

First it was “Lawsuits for the Cure,” as Stephen Colbert so aptly called it. Then it was the perfume debacle. But Komen finally went too far by denying funding to Planned Parenthood for breast cancer screenings. Apparently they went too far even for some of their own staff. I just read an excellent article in The Atlantic that says Komen’s top public health official, Mollie Williams, quit in protest when the funding was cut off. I’m glad to see that someone is still guided by a moral compass. You may be shocked when you read how they engineered the end of funding. It’s back-room politics at its worst.

I’m like many others in the blogosphere–although I was beginning to have serious doubts, the one thing that kept me hanging on was Komen’s support of low-income women. No more. They’ve done away with any pretense of caring about anything except their brand, and now, their politics. They will sue the smallest event, shill carcinogenic products, and create a rule specifically designed around reproductive politics, hurting the very people they once purported to help. Because make no mistake, women with money don’t go to Planned Parenthood. Women of means will always have a choice. It’s the poor who have their choices taken away. Komen’s actions are as despicable as they are arrogant.

It’s time to hit Komen where it hurts–in their wallet. They’ve proven time and again they worship the Almighty Dollar. (They were honest enough to remove “for the Cure” from their tagline. If they were completely honest, they’d change their pink ribbon to green.) I’m never giving another dime to Komen. I’m far from a big contributor. I’m good for about a hundred bucks a year, supporting friends in the Race for The Cure in Omaha and Kansas City. But multiply me by a million people and you’re starting to talk real money.

Donate to Planned Parenthood so they can continue offering screenings to low-income women. Donate to Metavivor (which goes to metastatic breast cancer research). Donate to (and join) the Army of Women. Donate to your local church that provides rides to chemotherapy patients. These organizations remember why they exist, and actually help people. Money talks; it’s time for us to start shouting.

Do Patient Empowerment & Squeamishness Mix?

Posted on by
15

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

Posted on by
23

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

Posted on by
14

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)

Posted on by
Reply

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

Posted on by
2

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?

Posted on by
7

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.