The Secret Language of Breast Cancer

In a recent New York Times post, the incomparable Dana Jennings called cancer a seminar. And there’s no question you become a student of cancer whether you want to or not. For him, prostate cancer brought out his inner scientist. You may be an indifferent student, hoping for the cancer equivalent of pass-fail, or you may dig deep and learn everything you can.

I was somewhere in the middle. As soon as my family doctor gave me the news he started tossing out 50-cent words like micropapillary and comedo. I scribbled furiously on the first thing I could take notes on (a bank brochure), guessing at the spelling. I went online to webmd.com and mayoclinic.com to do research and also used my diagnosis as an excuse to buy a stack of books.

I learned that comedo, micropapillary and cribriform are subtypes of ductal carcinoma in situ, the preinvasive cancer I was diagnosed with. I wanted to learn more about DCIS since I had never heard of it, but I didn’t want to know any surgical detail since I was a bit squeamish back then. (Five surgeries later, I’m over it. I even watched my nipple reconstruction, which only required local anesthetic.) As I went through mastectomy and reconstructive surgery, I learned more 50-cent words such as mastopexy (that’s “breast lift” to us civilians).  

Cancer subtypes and treatments aren’t the only new words that will enter your vocabulary.  You’ll also become well-versed in exotic-sounding drug names. I’m taking Tamoxifen to prevent cancer from showing up in my other breast. I’ve heard women discuss the merits of Gemzar and Taxotere, Arimidex and Herceptin.

For those not in the pink ribbon tribe, we might as well be speaking Martian. I was reminded of this after my book launch party last month. Two women with stage IV cancer, the telltale chemo buzz cut and incandescent smiles were tossing out cancer jargon like doctors at an AMA convention. A friend told my husband later she used to think she knew what her friend was going through. Listening to them, she realized she had no idea.

None of us planned to become fluent in cancer, nor do we intend to use language like a secret handshake. If you wonder what the heck your friend is talking about, I’m sure she won’t mind if you ask. It’s just that some experiences come equipped with specialized vocabularies, and cancer is no exception.

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Medicare Cancer Funding Drops for 6th Straight Year

As I was catching up on some post-vacation newspaper reading yesterday, I read an Omaha World-Herald article that said Medicare funding for cancer has dropped every year since 2004, with more cuts planned in each of the next three years. The article was actually about a couple of young women who created a dance video to raise awareness of the issue, but the sidebar examining the issue is what caught my attention.

For example, Medicare covers only 57 percent of the cost of chemotherapy, and the rate is scheduled to decline to 48 percent by 2013, according to a study by Avalere Health. Those of us who are lucky enough to get older had better be prepared to pay more out of pocket at a time when our earning power is less likely to be at its peak.

The low Medicare reimbursement rates are forcing community cancer clinics to close–166 of them nationwide in the last three years, according to the Community Oncology Alliance. We can probably anticipate more closures there as well.

Whether you’re a member of the pink ribbon tribe like me or have had some other form of the “c” word, you should be alarmed by this. We all should. Sooner or later, you or someone you know is likely to get cancer–possibly more than one kind. Breast cancer alone will strike one in eight women.

But we don’t have to just sit by and wring our hands. You can sign a petition at the Community Oncology Alliance’s website. You can also see where your Congressional representatives stand on the issue, and contact them. And you can spread the word by blogging about this issue, posting a link to the petition on your social media accounts and e-mailing it to your friends.

Beauty, Bravery & Breast Cancer: Revisiting The SCAR Project

I first blogged about The SCAR Project last November, after getting to know a young woman in Omaha who took part in it. In honor of the exhibition and book launch happening now, I’m reposting it.

I’m very lucky that my breast cancer waited to make an appearance until I was 52. I have a friend who was diagnosed in her 30s and is currently battling a stage IV reoccurrence. When it was my turn to join the pink ribbon tribe, I remember wondering what it would have felt like to be diagnosed when I was Pam’s age. I’m grateful I had a 20-year reprieve.

Since then, I have met other valiant young women who were diagnosed in their 30s and even their 20s. Jessica Dietze is one of them. A mastectomy veteran at 23, she contacted me after one of the essays I wrote about my experience for the Omaha World-Herald, and we struck up an e-mail friendship.

For Jessica and so many others to go through breast cancer at such a young age is wrong on too many levels to count. But something beautiful has come from it, thanks to photographer David Jay and The SCAR Project. Jessica volunteered to be photographed and flew to New York from Nebraska for a photo shoot. She learned about the project at breastcancer.org, where they put out a call for survivors under the age of 30. She said she wanted to take part to help show the young face of cancer.

The images are arresting. The women look right at you, compelling you to look back. When I look at them, I see beauty and defiance, dignity and strength. I see young, vital, sensual women. Who happen to have scars, and wear them like a badge of honor. They are warriors, and they are beautiful.

Forget Breast Cancer; We Need An Anger Cure

Earlier this week I thought I might blog about the pink overload that’s become October. Then I realized there’s something else that needs to be addressed, something more insidious than breast cancer and longer lasting than any awareness month. It’s anger, which seems so often to boil over into hate.

In 1998, late at night on October 6, Matthew Shepard was tortured and beaten to death for being gay. I saw a picture of him on Wikipedia recently and was startled and heartbroken by how beautiful he was. I bring him up because we must bear witness and should never forget.

Twelve years later, the haters have retreated to the safety of the Internet. On September 22, Rutgers student Tyler Clementi committed suicide after his roommate secretly videotaped him having sex with a man and posted it on the Internet.

This hate is not just directed at gays, and it doesn’t always end in death. At a lesser level, anger seems to be everywhere. You see it on cable news and in the blogosphere; as though he who shouts loudest wins. Doc Rob, who blogs at Musings of a Distractible Mind, wrote a post some months back about how much he enjoys and has learned from the autistic children he treats. Most people reading it could tell it was written with affection and respect. Yet some autism activists reacted as though he said he eats kittens for breakfast, and attempted to hijack his blog.

Just last night, I found out someone was leaving the Twitter community over threats too hateful and vicious to repeat here. The one ray of hope was the people who came to her defense and alerted the rest of us. The Internet makes it so easy to hide behind anonymity and spew garbage from the safety of your keyboard. I guess we should be grateful that even more people don’t do it.

We know about the cowards and haters on the Internet. We know emotions run high with politics, religion and sex. But I was floored yesterday as I read More magazine, which targets women over 40. The editor asked for a cease and desist on “beauty anger.” Apparently, women are bashing the magazine for using celebrities instead of “real” women, alleging said celebrities have had plastic surgery. The editor responded that celebrities sell magazines and that she doesn’t know who’s had work done. She asked that everyone agree to let women age the way they see fit.

There’s an easy solution. Don’t read the magazine, or the blog, or the tweet. Or, here’s a thought; if you disagree, try stating your case. Anyone remember how to do that? When did we reach the point where we think we have the right to attack each other’s choices, or worse, each other?  

I know some of you are thinking, “Of course she’s going to take the kumbaya stance; she’s a girl.” So let me point out that same issue of More had a fine essay on female anger by Pam Houston, author of Cowboys Are My Weakness (best book title ever and the short stories it contains are good too). She talked about how the hormonal changes in menopause can make her want to hurt bank tellers for taking too long with her deposit. I know those feelings well. But, like Houston said, you learn to call upon your “observing ego” to sort righteous anger from free-floating rage. Or at least some of us do.

I don’t know if an Anger Awareness Month or Rage for The Cure or even a Use Your Indoor Voice campaign would ever catch on. But we need to do something. A collective deep breath might be a good place to start.

Breast Cancer: The Unlikely Muse

If you’re lucky, cancer can help you reconnect with friends and family. If you’re really lucky, old loves like art and music may reappear in your life as well. When I was diagnosed with ductal carcinoma in situ, if you had asked me what I expected to happen, the last thing I would have said is, “I’m going to start writing poetry again.”

I’ve loved poetry ever since I can remember, and started writing it in grade school. I took a couple of poetry writing courses in college and kept reading and writing after that, getting a handful of them published. One of my proudest moments was having a poem published in a little journal that also included poems by William Kloefkorn (Nebraska’s poet laureate) and Ted Kooser (a two-time national poet laureate from Nebraska.) I even had a poem published in Rolling Stone magazine (which believe it or not, used to include poetry.)

Then it left me and I have no idea why. I stopped writing poems and barely read them. I missed it but I didn’t try to change it. I really thought that part of my life was over.

When I was diagnosed with DCIS some 20 years later, poems started speaking to me again. I remember reading a poem by Franz Wright in The New Yorker the day my oncologist recommended a mastectomy. That night, several tornadoes touched down around Omaha.

The first stanza read:
“What a day. I had some trouble
following the plot line; however,
the special effects were incredible.”

This couldn’t have spoken to me more directly if it were texted. My poetry radar was humming again. Several months later, my husband Bruce and I were vacationing in Cabo and stumbled into a CD launch party at an Italian restaurant. I was beyond floored when the singer started reciting a famous Beat poem, “Truth.” I had loved this poem in high school but hadn’t thought of it in a good 30 years. Turns out her dad wrote it. I found myself reciting the lines with her. G.K. Chesterton called coincidences “spiritual puns” and this sure felt like one. It was around this time that I started writing again.

Since then, I’ve written dozens of poems and had a handful of them published. And I’m so grateful to have this part of myself back. I don’t know how to attribute it to anything but breast cancer. No matter how early it’s caught, it’s still a wake-up call. You start wondering what you want to do with this life you’re so lucky to have.

It’s funny, people ask me about fear of reoccurrence. I’m not worried about my breast cancer coming back. I’m worried about the muse leaving me again. That’s my fear of reoccurrence.

Note: Here’s a poem I wrote about my friend Pam, and included in my book From Zero to Mastectomy. Pam has the face of a beauty queen and the heart of a lion.