Why Is Everyone So Honked Off at Komen?

“For everyone to whom much is given, of him shall much be required.” — Luke 12:48
 

First, apologies for the exaggeration in that linkbait title. Obviously not every single person in the world is mad at Komen, although I’m sure it must feel like it sometimes to their PR people. This post is more of an open letter to Komen. So here goes.

Dear Susan G. Komen for the Cure,
I’m sure you must be wondering why so many people are coming down on you, when all you want is to help women with breast cancer. I won’t go into the actions that have prompted irate reactions; I’m sure you’re already well aware of them. (For those readers who aren’t, I encourage you to visit Pink Ribbon Blues and The Cancer Culture Chronicles.)

The one argument I would like to make here is on behalf of research. There are a lot of people out there, including me, who would like to see you shift some of your considerable influence and money from education to research.

 My friend Rachel, who blogs at Cancer Culture Chronicles, recently looked at what you do with your money and found that between 2004 and 2009, you spent only 23% of “Net Public Support and Revenue” on actual research, compared to 36 percent on education.

Rachel is an accountant so I trust her numbers. Beyond that, she is fighting for her life against metastatic breast cancer. I trust her to correct any math errors she sees in my posts, that is, if she can fight through the steadily worsening pain and get her arm and eye to work. This is what metastatic breast cancer does. It marches through the body like Sherman marched on Atlanta, torching everything in its path and rendering it useless. Rachel and her doctors are doing everything they can to fight it off, but since no one really knows how mets work or how to stop them, they’re using the medical equivalent of pitchforks and clubs against the nuclear warhead of endlessly replicating cells. They’re buying time.

This is why I beg you to focus more on the research that may help Rachel and other friends of mine, like Pam, stick around. After all, you’re for The Cure; your name says so. And isn’t the only way to find a cure through research?

With more than a third of your money going to education, it’s clear that you think education and awareness are important. But I would argue that the pink awareness ship has sailed, and it’s laden with retail merchandise. If there’s any doubt breast cancer awareness has its own shopping season, no less a bastion of capitalism than the Wall Street Journal says so. If that doesn’t make it official, I don’t know what does.

The widespread success of Pinktober is in large part due to your efforts. No one has done more to raise awareness of breast cancer than you. You’re the gold standard, the 800-pound gorilla of awareness. No one who has followed your story can doubt the power of how one woman’s promise can turn into a grassroots movement and then some. Just think of what could happen if you focused that power on research.

Think of all the good you’ve done already. Think of how much more good you could do. We’re counting on you. Rachel and Pam are counting on you.

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My Former Life

Many of us who have been diagnosed with breast cancer divide our lives into B.C. (Before Cancer) and A.D. (After Diagnosis). But this post isn’t about that. It’s about a chapter of my life that simply ended because it was time. It was inspired by two people I’ve come to like and respect more than I thought possible just knowing someone online: Marie O’Connor, who blogs at Journeying Beyond Breast Cancer, and Greg Smith, who blogs at gregsmithmd.

Marie recently invited people to blog about/comment on their “other life;” who they are when not dealing with breast cancer. (My blogged response centered on poetry.) Greg is a compassionate psychiatrist (and one heck of a good writer).  They both got me to thinking about my former life as a mental health worker. That life ended long ago; I started writing professionally for a living in 1989, but for the nine years leading up to that I was employed at a community mental health center in Nebraska.

I worked there while moseying toward my journalism degree as a part-time student, working my way up from receptionist to secretary for our medical director to providing direct service. My dream was to become a community mental health educator, and I got to do a bit of that through an internship.

Most of the people I worked with were schizophrenic.  Some of them are smarter than I could ever hope to be. One of our guys sent a physics or math-related proposal to MIT, and they were interested until they saw his return address at an inpatient facility.  Some had the double whammy of mental illness and mental retardation. 

Try to imagine that the organ that’s failing you is the organ you use to perceive the world around you. I went through a minor punk phase back then and had purple hair. I’ll never forget  the client who asked me one day, “Is your hair purple?” The question makes perfect sense when you realize it’s coming from someone who can’t trust what they see.

Some of the bravest people I have ever met or will ever meet were people dealing with that disease. I remember the woman who went off her meds when she found out she was pregnant. She knew what was coming and it scared her, but she didn’t want to harm her baby. I remember the man, as old then as I am now, who told me he’d  love to have a wife and family but had to accept that’s never going to happen. He wasn’t bitter, but wistful.

Some of the best memories of my life are from that time, in that place. The lessons I learned there have served me well in life. My clients were wonderful, valiant, funny people. (Yes, people dealing with mental illness have a sense of humor. One of my clients, a gorgeous young man and talented artist, had obsessive-compulsive disorder. I still remember his joke about being in church one day and wanting to yell at the priest after reciting the Hail Mary, “You didn’t say it enough times!”)

What does this have to do with breast cancer? Nothing and everything. Since then, my professional life has involved writing, first for technology magazines, then in agency and corporate PR. I’m blessed to be able to actually do something related to my field of study. But it doesn’t provide the same warm fuzzy that you get from being in a helping profession.

This is where breast cancer comes in. It’s a community full of wonderful, valiant, funny people. And I never would have been a part of it if I hadn’t been diagnosed. Reaching out to people through social media and my book gives me a rush I haven’t had since those mental health days. This is one reason I’m grateful for my experience, and why for me it was an overwhelmingly positive one.

What Lady Gaga Can Teach Breast Cancer Survivors

Credit: Rick Diamond Getty Images

Today was a typical Sunday. Chores were over, time for Bruce and me to park our rear ends in front of the TV for some serious Sunday night channel surfing. We were flipping through our DVR list playing “Keep or Erase” and found the Lady Gaga HBO concert at Madison Square Garden. I was ready to vote “Erase” until he flipped it on. It took me all of 30 seconds to become hooked.

Some of the people I like best in this world are gaga for Gaga. They happen to be young and gay, but she crosses all gender and orientation lines. With a boyfriend who hails from Nebraska, Gaga sightings have been plentiful in Omaha. One of our better known oncologists tweeted the most recent one, when she filmed a video on a country road in sweltering 115 degree heat.

I confess to being curmudgeonly where Lady Gaga is concerned. The last time a friend tried explaining her appeal, I dismissed it with a classic walked-to-school-both-ways-uphill-in-the-snow remark. “Madonna was here first and did it better,” I said with the power of my completely uninformed conviction.

I started softening a bit when I saw how funny she was in a couple of “Saturday Night Live” sketches and noticed she can actually sing. But what got me hooked was seeing her talk to her “little monsters,” as she calls her fans, during that concert. Gay or straight, they’re monsters in the sense they feel like outcasts and misfits, the same way she did, the same way many of us who’ve been on the breast cancer journey do.

We’ve traded the confusing and sometimes cruel high school experience for the equally confusing and sometimes cruel healthcare experience. We feel like cogs in a machine, less ourselves somehow after being poked and prodded and cut, less lovable for having scars and pain. We feel too needy or not needy enough, too strident or not activist enough, or like we’re doing cancer “wrong.”

This is where Lady Gaga’s message comes in. Be yourself, she told her monsters. Someone believes in you. Her message to her fans, herself–in a touching scene she talks about how she still feels like a high-school loser–and to us, is simple. You’re perfect the way you are, and you matter. The special ends with her singing a stunning a cappella version of “Born This Way,” the song that’s become an anthem to misfits everywhere. She sings, “There’s nothing wrong with loving who you are . . . I’m on the right track, baby, I was born to be brave.” You were, Stefani, and we salute you. Paws up!

Picking Blackberries

It’s August, and that means it’s time to pick blackberries. This is the time of year when we get several quarts every couple of days from the unruly tangle of blackberry bushes in our back yard. It’s been so hot that the large metal bowl I like to use gets almost too hot to touch, so I swapped it out for a plastic bowl. Luckily, the heat has backed off a bit.

Our blackberry bushes are thornless, which wasn’t supposed to happen. We’d always heard that thornless blackberries don’t survive Nebraska winters, but we accepted a half-dozen cuttings from Bruce’s sister’s Kansas City plants figuring we had nothing to lose. Now they’re threatening to take over that part of the yard and we get a bountiful crop of blackberries each year, enough to put on our daily yogurt and freeze for the winter. (I would say “and to share” but I’m selfish where blackberries are concerned.)

While the blackberry bushes’ attempts to crowd out the viburnum and buffalo grass could be likened to the endless replication of cancer cells, they remind me of my cancer journey for other reasons.

First, their harvest season coincides with my treatment timeline. I had my mastectomy on July 15, 2008, and remember interrupting my blackberry picking several times to take phone calls from Bruce or Dr. Moshman as we were plotting our next steps.

One phone call that stands out for me was shortly after I started taking Tamoxifen. Dr. Moshman asked me to schedule a lab appointment to get some clotting tests. (Tamoxifen puts you at increased risk of blood clots.) Sure, no problem. I wondered why the lab tech said, “I hope you brought plenty of blood today,” until she pulled out 10 vials. I must have taken every clotting test known to mankind.

The other reason is more basic and possibly more instructive. Picking blackberries forces you to be in the moment. Sure, your mind can wander, but making your way through a blackberry patch provides plenty of sights and sounds that invite you to be here now. The flutter of wings when you startle a berry-loving robin. The intricate design of a banana spider’s web. The swallowtail butterfly weaving in and out of the neighboring dill.

Like pulling weeds, watching a baseball game or getting lost in a really good book, picking blackberries takes you out of yourself. Which is a very good thing where cancer is concerned. You can’t eradicate it from your life, but you can and should call the occasional time out.

Breast Cancer Is Not Just About You

In honor of last night’s Twitter #bcsm chat, which focused on how cancer affects caregivers/family members, I’m rerunning a post I originally ran last year. If you’re on Twitter and haven’t checked out this chat, I encourage you to do so. It’s on Monday nights at 9 p.m. Eastern time.-Jackie)

Deciding what to do when you’re diagnosed with breast cancer is one of the loneliest decisions you’ll ever make. Your doctors will give you  their best counsel, but it’s ultimately up to you.

Although you’re the star of this horror show, if you have a family, breast cancer affects all of you. Both my husband Bruce and I felt hounded by pink ribbons in the early days of my diagnosis. We decided to escape by watching the John Adams miniseries on HBO and wouldn’t you know it, his daughter had breast cancer. It was fine until they got to the 18th century mastectomy minus anesthetic. Bruce yelled at me to leave the room. When I came back, I said, How was it?” and he said, “I don’t know, my eyes were closed.”  

Bruce was more scared for me than I was for myself, although he didn’t share his fears with me until I became calmer and stronger. At one point he asked me if I would consider the double mastectomy as prevention, and asked me to think about it. I waited for about 30 seconds and said, “I’ve thought about it. No.” He told me he didn’t want me to die and I told him I wasn’t going to die and preferred dealing with one breast at a time. But first and foremost, he told me he would stand by my decision, and he’s been true to his word. I couldn’t have asked for a better partner to accompany me on the cancer roller coaster. 

Bruce was amazing in too many ways to recount here, but I’d like to share what a great source of humor he was throughout this adventure. (Yes, cancer does lend itself to humorous moments and I would urge you to take advantage of them when you can. Sometimes that’s the only power you have over a situation that sucks.)

When we were waiting for our first consultation with the doctor who would become my oncologist, I said, “Well, at least nothing can surprise me now.” (We had been assuming for two months that I would undergo radiation and had just had a different oncologist recommend a mastectomy.) Bruce leaned over, lowered his voice and said, “I’m sorry–we’re going to have to cut off your head.”

One of my favorite stories about family decision making was in the October 2009 Omaha World-Herald Healthwise supplement. (I can’t link to it for you because it’s not archived online.) The woman’s family voted on a white board posted in the kitchen with headings “Save the Boob” and “Lose the Boob.” (In case you’re curious, they voted to lose the boob.) That’s a family I wouldn’t mind being a part of.

Your turn–how did your family members handle it? How did they prop you up or make you laugh?