Discussing Breast Cancer

Not sure “Why I Wore Lipstick” was a popular choice for the May book club selection (no comments).

So … I’m putting the June book club selection choice to a vote. Remember, whatever the majority chooses, we read.

On the last Wednesday of the month I’ll post my review; if you email me, I’ll post yours … OR you can just add your two cents in a comment and we’ll let the discussion prevail!

This month’s book club selection was Geralyn Lucas’ memoir. The book has enjoyed lots of hype; check out its spin off website. (The Lifetime movie based on the book is available on that site for download. FYI, I saw the movie and I’m not sure the book was better. It was more in-depth, and more honest, though I’m not sure that’s a good thing.)

Geralyn was 27 when she was diagnosed. She had a killer job at 20/20, one she earned and deserved, and a doctor husband, who she probably also earned and deserved. She began wearing red lipstick in college and each time she put it on she felt her confidence rise. Red lipstick gave her power. So much power that she wore it to her mastectomy surgery and her topless photo shoot for SELF magazine’s annual breast cancer handbook. That was the overall theme of the book — a good theme indeed.

I feel bad, really bad, for saying this … but her job, her husband, her connections … they all made Geralyn a bit unreal to me. (Barbara Walters sent her three dozen white roses while she was in the hospital for heaven’s sake, not something many of us can relate to.)

Also, Geralyn was way to wrapped up in physical beauty to begin with for us to have much in common. I should have expected that, it says right on the front jacket of the dust flap that she was “a young girl with cancer in a beauty-obsessed culture.” My looks have never defined me and hers sure as heck have.

In the first chapter, Geralyn wrote, “First my breast will be cut off. Then my hair will fall out. And when there is nothing left to strip, maybe there will be a revelation of a different beauty underneath.”

Amen, I thought, bring it on! I wanted to read about her revelation. But I didn’t. Instead I read about her implants and her personalized tattoo — her recovery process all seemed so vain. I was just so happy to be alive after my double mastectomy/reconstruction, I really didn’t care if I was still turning heads (Geralyn was proud that she’d always turned heads before, that was part of who she was).

Now before you start getting all turned off by the book, there were great anecdotes inside, however, and I thought it was easy and entertaining to read. Like this one from Chapter 4: “If a one-balled-man and an about-to-be-one-boobed-woman can somehow end up dancing in a taxi in a city of millions and figure out this hidden truth within the span of a seven minute cab ride then somehow I will survive this ordeal.” I loved that line. I also loved the truth to which she was referring … that “any luck thrown our way we need to grab and try to believe good things will happen.” it’s a great truth. A truth deeper than physical appearance meaning the world.

I wanted Geralyn to be as empowered as she claimed to be as she lost her hair but instead she clung to the very last piece with utter dependency.

I wanted Geralyn to write more about the trouble she had with her husband during that time and help me understand that she was able to make love to him the night she came home from the hospital, draw apart from him after that, then come together to have a child with him … I wanted more from her there and I didn’t get it.

In Chapter 12, she wrote she “had definitely discovered” her “inner cleavage” but she didn’t show me that she had. As a writer, I kept thinking … show me Geralyn, don’t tell me.

Perhaps the most meaningful line in the entire book was written in the afterward: “Sometimes I think about what would have happened had I not done that breast exam and saved my life. All the moments and all the lipstick shades I would have missed.”

That’s powerful. I love that she laced the lipstick analogy throughout the entire book and even ended with it in just that way. It’s a powerful analogy about power.

I just didn’t feel she really, really believed what she was writing.

Alright, let me bring the new readers up to speed since my story is taking months to tell (truth be told, I purposely digress at times).

I was initially diagnosed with DCIS (ductal carcinoma in situ) in July of 2003 at the age of 35; I had a partial mastectomy and radiation therapy then went on Tamoxifen and was supposed to stay cancer free.

I was diagnosed with Stage 1 IDC (invasive ductal carcinoma) in April 2006 at the age of 38; I chose to have a double mastectomy and wanted immediate reconstruction. Having had radiation therapy before, implants weren’t my best reconstruction option, so I decided on a pedicled TRAM flap. My plastic surgeon, Dr. Narayan, explained how he’d take my abdominal fat and muscles and move them to my chest. If you’re a skinny minis, you wouldn’t have enough to work with, but apparently I hadn’t dedicated my breakfast time to Special K. Dr. Narayan could certainly pinch an inch and actually, he could pinch 3 inches. In each hand.

“What is your cup size,” Dr. Narayan asked me.

“I’m a ‘C’ cup,” I replied.

“Hop on,” he said as he patted the exam room table. I climbed up, lied down, Dr. Narayan lifted my gown to expose my stomach and literally grabbed my two handfuls of my belly then said, “yes, you’ll have enough.”

I’d never felt so glad I had some belly fat.

Then the real kicker.

“Did you ever smoke?” he asked.

“Socially,” I replied. “In college.”

Then the disapproving look. Apparently when you combine even limited cigarette use with previous radiation therapy you’re at risk for TRAM flap failure. Who knew?

So Dr. Narayan wanted to do a preliminary procedure to ready the tissue for the surgery, to improve the blood supply to the area. He called it a delay procedure (don’t let the name fool you, it happens before the reconstruction). The delay procedure was an ambulatory surgery. It was supposed to be a piece of cake. In and out. No big deal.

No big deal???? HA!

Dr. Narayan sliced a six inch piece of my abdominal pie then the nice nurses at the Temple Surgical Center sent me home. Goodbye!

I couldn’t walk. I could barely sit. I couldn’t believe it. I had an incision in my abdomen as big as those my friends had gotten when they had C-sections and I thought I was going to walk out of there and resume life as normal. Holy crap, talk about underestimating ambulatory surgery.

It was ten days prior to my mastectomy. I was supposed to have those ten days to get myself mentally prepared for ‘the big day.’ Instead, I had ten days to freak out because I was so incredibly unprepared for my delay procedure.

Of course, just when I started to get better … I was headed to the OR again.

Breast Cancer, Mastectomy, Reconstruction, Surgery, TRAM flap

As I prepare to take my daughter downtown to watch her brothers march in the Memorial Day parade (well, ride, actually, b/c my husband’s jeep will be pulling them on a float, aka a landscaping trailer) … my thoughts are with the men and women of the armed forces.

Our Commander-in-Chief, though he may get razzed and blamed and ridiculed and patronized … I can give him this: he’s a man of sincerity and prayer.

Read the press release he (aka, his staff writers) wrote about today’s holiday.

I respect and appreciate his prayerful side.

Meanwhile, my Great Uncle Gene who served stormed the beaches in Normandy, my brother-in-law Dennis, who was an ARMY officer until his retirement just a few short years ago, and all the servicemen and women who are active today … I salute you.

Who do you salute?

I realize I have to write this post before I tell you about my mastectomy surgery. It’s the post about my reconstruction decision.

See, after you decide what cancer-eliminating surgery to get, you have to decide what reconstructive surgery to get, and there are a lot of options.

Quite frankly, not reconstructing was not an option for me. I wanted a shape after my surgery. I wanted breasts. I LOVED my breasts, not something I’ve talked about much before, but trust me, I LOVED them.

I remember my first pink silk Sassoon training bra (remember the tagline, “OOohh La La Sassoon” and the little ‘okay’ symbol on the tag? No? Well I do. Clearly.) I was too young for breasts but not at all too young for the fantastic pink silk training bra my mother bought me.

I remember the first time my newly developed breasts were noticed. I was walking from one building to another on the first day of my senior year in high school — I was a September baby so I was not even 17 — and Gerald, the president of the student council, stopped me with a ‘WOW,’ reaction because apparently I’d developed over summer vacation. I may not remember actually developing, but do remember that first day of school my senior year.

I remember the competition that the guys on my floor freshman year in college introduced between my roommate and I: whose were bigger? People actually walked by our door and voted on our memo board and we didn’t complain (actually, the tally was right on our door … how could we have allowed such graffiti to take place?). My roommate won, eventually, and if you saw her now you’d never even imagine I could be in her league.

I remember the day the boys who lived across the hall from us named my breasts after themselves because they liked them so much. Stephen claimed the one on the left, the sweet, quiet breast that was always in the shadow of the other. The one on the right became Andrew, the slightly bigger of the two, slightly rounder and ironically the one to cause me trouble one day.

I remember that same year when Craig, a fraternity brother at the beloved Phi Delt, nicknamed me ‘Cleavage’ because he said when he looked at me, that was all he saw. Actually, I remember the v-neck white t-shirt I was wearing when he nicknamed me and the exact party we were at … the FIJI paint party … amazing what neon paints can do to a white t-shirt in a neon light in a fraternity bar room.

I also remember breastfeeding my two sons, using my breasts the way that God intended me to use them for, and I remember the peaceful feeling that gave me, the nourishment that gave them, the overwhelming feeling of togetherness that gave each of us.

Yes … I loved my breasts and the identify they gave me. They weren’t being taken from me completely.

It wasn’t even that hard to choose an option b/c I’d already had radiation therapy to one side … the plastic surgeon recommended a pedicled TRAM flap and I said yes.

Little did I know how complicated that surgery would actually be for me.

Breast Cancer, Health and Wellness, Mastectomy, Reconstruction, Surgery, Women’s Health

The more I blog about breast cancer, the more I realize it is easier to share information about breast cancer related studies and products or services than it is to write about topics that are painful to revisit.

Some aspects of my journey have been easy to share … like my first cancer diagnosis in 2003. That was DCIS, easily treatable with a protocol treatment plan. Kind of a no-brainer. Not that it wasn’t hard in many, many ways. But looking back, it was manageable, and not so hard to write about.

I’ve shared a few posts (like with this one) about my recurrence, my IDC diagnosis last Spring and the decision I had to make related to my mastectomy surgery.

Those posts were harder to write.

I have yet to tell you the details of that surgery … that’s the seriously hard stuff to revisit. Rock hard. Cement hard. Concrete hard. (Wait, which is harder, cement or concrete? It’s as hard as that.)

That stuff is coming up next. I’m sorry I’ve been putting it off. I didn’t even journal my way through last year. A therapist would have a field day with that.

Today I’m headed to Yale for a follow up with Dr. Lannin, the surgeon that removed both my breasts. I thought perhaps that was my sign that it was time I shared what my double mastectomy was like.

So that’s what I’m going to do.

Tomorrow.

What are the environmental causes of breast cancer and how can we put an end to them? That is a question that should be top of mind for researchers.

Last week I interviewed a survivor for a story I’m working on (yes, I do that often) and she was talking to me about her organization (Connecticut Breast Cancer Coalition/Foundation) and the research they are working on funding related to the link between the environment and breast cancer cases.

This morning I read this cool article in the Jamaica Gleaner of all places about a study conducted by the Silent Spring Institute in the US (funded by Susan G. Koman for the Cure and assisted by additional researchers from Harvard University, Roswell Park Cancer Institute and the University of Southern California): Environmental Pollutants and Breast Cancer.

Here’s the fact that made me take pause: “The researchers identified 216 chemicals that caused breast tumours in animals. They broke down the compounds in this way: 73 are present in consumer products or as contaminants in food.”

Contaminants in food … holy crap, we’re doomed. Just when you think you’ve heard enough reasons to only consume organic foods but you’re still not changing your ways, this comes up. (Believe me, I’m a seriously slow convert myself; maybe this will be the conduit for change for me).

So I’m nervous, right, and I go on to read this on the Silent Spring Institutes’s press release on the study: “the overwhelming majority of chemicals people are exposed to have never been tested for cancer risk.”

Holy crap. Just think about it.

More research needed? Heck, yeah! Let’s save our daughters and our granddaughters from getting breast cancer when they’re … say … ten.

I just read an Associated Content article at dentalplans.com about Chemoprevention. The article is called Top Drugs to Prevent Breast Cancer. Admittedly, the writer states that no drug actually does prevent breast cancer. So why the heck did she say that in the title, you ask? Because she wanted a strong title? Because she doesn’t have a glimmer of experience on the topic but wanted to make a buck writing about it? Because she doesn’t realize that there are a ton of people out there that would have given their lives to prevent their cancer diagnosis? Who knows … but it ticks me off.

You can’t always trust Associated Content articles so be careful what you read. Associated Content states on their web page that writers are invited to “share your knowledge and earn extra cash along the way.” They are not necessarily credible news stories and their articles cannot be viewed that way.

Now, giving the writer the benefit of the doubt, and the people at dentalplans.com for that matter, the article does state the names of a some popular drugs and provide links to pages where the reader can get more information. She clarifies her title in the first sentence.

But I urge you to be wary of what you read, in case you aren’t reading information from a reliable, credible journalistic source, and read beyond the title.

You can, on the other hand, trust a reliable source like the MayoClinic for the scoop on Chemoprevention.

Be smart about what you read … and I’ll do my part to help you filter out the crap as best as I can.

Oh my goodness … sometimes generosity just blows me over.

Last September, more than 1,000 quilt shops held Quilt Pink events. Quilt Pink, isn’t that cute? Quilters around the world put together some 4,000 quilts (like the one on the left) and they are now being auctioned off on eBay to raise funds for Susan G. Komen for the Cure. 100% of the sales price will go to this charity. WaaaaHOOOOOOOO!

Love this. LOVE this. Check it out: eBay’s Charity Store!

Apparently there is a company called MissionFish that specializes in eBay auctions for nonprofits. COOL — you can search through their listings by charity, and they’re all in there: American Breast Cancer Foundation, American Cancer Society, Breast Cancer Research Foundation, breastcancer.org, CancerCare, Susan G. Komen for the Cure, Young Survival Coalition … WAAHOO!

I just get so pumped up when I see people doing such great, great things for the cause, don’t you?

A new category of drugs called luteinising-hormone-releasing hormone (LHRH) agonists (say that ten times fast) are effective treatment for premenopausal women with estrogen receptive breast cancer according to a report in the UK medical journal, The Lancet.

Read the news story here; meanwhile, here’s a quote from The Lancet: “LHRH agonists provide an additional class of agents for treatment of premenopausal women with hormone-receptor-positive breast cancer.”

I’ve been saying for a while now that there were few adjuvant therapy options for premenopausal women — and that more research needed to be conducted in that area. Apparently I wasn’t the only one that felt that way. Way to go all.

As I learn more about this one, I’ll get you more information.

Many thanks to Erinn over at Parenting our Children … I appreciate the fact you forwarded me that link!

Yesterday I interviewed a woman for an article I’m working on … a survivor with metastatic breast cancer … I’ll call her Lady M.

Lady M was diagnosed eight years ago with mets … so she only knows life with advanced, chronic breast cancer.

In the course of our conversation I mentioned another survivor I had talked to recently, a woman who had DCIS, was treated, and is now cancer free. I’ll call her Lady D.

Lady M basically jumped down my throat when I called Lady D a survivor. “She didn’t even have cancer,” she said.

And it is true, in some books or articles, DCIS is still called pre-cancer. But other research has shown … DCIS is cancer. Not invasive cancer, but cancer just the same.

I keep thinking back on that interview, because it bothered me on many levels. As a journalist, I tried to remain objective though I felt somewhat defensive of Lady D. Having had DCIS originally, I know first hand that DCIS is a precursor to invasive cancer — my invasive ductal cancer (IDC) diagnosis came not three years later. I know I was lucky, but to say I didn’t have cancer at that time … well, after surgery and radiation and hormone therapy … sorry, that was cancer treatment. It counted as cancer. I got to wear the survivor badge because I’d earned it. Lady M would beg to differ I’m afraid. She’s did a lot more to earn her badge. A lot more.

When I was diagnosed with IDC last year, a friend of my husband’s said, “geesh, I got you such a great gift the first time around, I didn’t know that was only baby cancer,” and I laughed at the analogy.

Baby cancer. Practice cancer. Not the real deal.

I think what people mean when they talk about DCIS this way is that people with DCIS that get good treatment don’t die.

People with mets do.

I don’t know the answer, if DCIS is cancer or not, but DCIS did lead to my own diagnosis of IDC, and that pushes me towards the former.

What are your thoughts?

Ten years ago Nina Barough (left) and a group of her supporters walked the New York Marathon in their bras to raise money and awareness for breast cancer research.

That must have been a sight — did anybody see that live?

Playtex was one of Nina’s sponsors back then. They were visionaries in the charity world, apparently, because today, the Playtex MoonWalk has become a fabulous charity event in London and has raised over £20 million. This year’s grand event is taking place in just three days!

(Head over to the The Playtex MoonWalk site and also read tips on how to measure for a perfect bra fit as an added bonus for visiting.)

It’s not too late to join the fun or support the cause with a donation — check out how here.

And if you feel it’s too late now, think 2008. I personally could probably even talk my husband into heading to London for this one next year (since he is the one who forwarded me the link … thanks, dear),

I’m talking about GoodSearch, of course. Their motto? “You search, we give.” Powered by Yahoo! Search, GoodSearch is an equally high-quality alternative to Yahoo! Search or even Google … any of the other search engines you use. The difference is that the people behind this philanthropic search engine give 50% of the site’s revenue to charity — and you can choose the beneficiaries.

If you don’t specify a charity for your specific search, GoodSearch chooses a different one every day that reaps the benefit. For example, the charity of the day TODAY (May 16, 2007) is none other than the Lance Armstrong Foundation. How timely for my readers here since I just blogged about LiveStrong two days ago!

So why not bookmark the GoodSearch page, add the GoodSearch icon to your toolbar, make the GoodSearch page your homepage … anything to keep the idea top of mind. Here’s the link again.

Simple concepts if you are a scrapbooker, right?

If you aren’t, let me explain. Scrapbookers love to ‘crop’ their photos and put them into scrapbooks that capture their memories in a way that no simple photo album can. Combining a love of scrapbooking with a passion for helping the cause, well, that’s a win-win situation.

I happen to be one of those scrapbookers; you can read some of the articles I’ve written on the subject over at Garden and Hearth. I also write for a scrapbooking trade journal called Scrapbook Business (formerly Scrapbook Premier).

So I’m privy to lots of industry ongoings, including this one I want to share with you:

A company called Yellow Fence is offering a limited edition shirt and bag to raise money for breast cancer awareness from now until October 31st (check it out at Yellow Fence Products).

Lance Armstrong has had a tremendous influence in the world of cancer survivorship. His story is so inspiring — his childhood passion for bicycle riding enabled him to become a world champion cyclist by age 25. In 1996, he was diagnosed with an aggressive form of testicular cancer and endured an equally aggressive treatment. Then he went on to take six consecutive Tour de France victories. His survivorship is almost supernatural. But he’s human and making a huge difference for others who have to take a ride with cancer.

One trip to his website and you are united with all survivors in their fight against cancer. That’s Lance’s mission over there. A united front. A united army.

It’s important to fight against breast cancer because it’s personal; it’s our cause to fight for and we can pour all our passion into it and that’s what we are meant to do. But there are times we need open our hearts to the world of survivorship and acknowledge everyone’s battle. Tout le cancer suce, if you’ll excuse my French … all this talk about the Tour de France has me translating!

Head to Lance’s site and check out some survivor stories. Read his blog. Join his army (the petition is online). Shop his store. Purchase an infamous yellow wristband (to wear on the days you aren’t wearing a pink one!).

You may not be riding in a Tour de France after your battle with cancer but you can still live strong.