cut through the crap

All the junk science and bogus claims¹ about breast cancer are really getting to me these days. What bothers me even more is that some of the denial and outright obfuscation comes from sources we in the mainstream are supposed to trust.²

How do you decide what's real?

With so many conflicting messages about lifestyle changes, what advice are we to follow?

And when are those in a position to do anything going to truly investigate the environmental links to breast cancer? (I know the answer to that one. Probably never.)

It's enough to send a girl back to bed. It's pretty dark under the duvet. Maybe I can hide from the world for a while and pretend all that annoys me doesn't exist.

That's not a terribly constructive solution though, so more and more I'm turning to all the good stuff on the internet. There are lots of smart people advocating for themselves and others. And, thankfully, there is always Breast Cancer Action.

Image courtesy Breast Cancer Action.

I just signed up for a"Webinar" called "Separating Hype from Hope. Breast Cancer Media Literacy." You have to register in advance but it's completely free. There are two sessions, one on Wednesday, May 29 at 10am PST/ 1pm EST and one on Thursday, May 30 at 2pm PST / 5pm EST.

The agenda includes the following:

•  The larger picture of media literacy
• What is right and wrong about health coverage in the media
• The current state of journalism and its impact on consumers 
• How industry and pharmaceuticals influence health news reporting
• How an issue is considered newsworthy
• The 10 criteria for medical stories with specific breast cancer focused examples 
• How to give reporters feedback
• How you can get involved

Sounds like a breath of fresh air. I'm in.

Courtesy xkcd.com and thanks to a friend for this timely alert.

¹ The article that I linked to was at the very top of the page when I Googled "cure for cancer." Ugh.

² For example, this is from an article, "Barbara Brenner, breast cancer iconoclast, dies at 61": 

"Dr. Otis W. Brawley, the chief medical and scientific officer of the American Cancer Society, called Ms. Brenner “a dear friend,” but added, “I didn’t agree with her, probably 40 or 50 percent of the time.”

One point of difference was over whether environmental factors play a major role in cancer. Ms. Brenner thought they did; Dr. Brawley is skeptical."

Barbara Brenner: a real hero

A formidable woman passed away earlier this month. Barbara Brenner was the former Executive Director of Breast Cancer Action and an articulate and out spoken advocate for change. Her voice cut through a haze of pink, raising awareness of corporate exploitation, pink ribbon crap and the environmental causes of breast cancer. She was a real hero, who died way too young.

My friend Tamara sent me this excellent article from the New York Times. She drew my attention to the last line, a wonderful quote from Suzanne Lampert, Ms. Brenner's spouse of 38 years:

“I always told her that I would make sure her obituary said she died after a long battle with the breast cancer industry.”

brain slurry and eye candy

I seem to still be recovering from the weekend, with a brain full of mush. For those new readers I picked up after my post on Angelina Jolie - you might want to come back tomorrow.

Here's some of the random slurry from my brain:

Speaking of slurry, my 10 year old's baseball team voted on a name over the weekend. The results came in yesterday.

After one failed experiment, I made my own eye makeup remover yesterday. I don't wear makeup very often but when I do, I want something that will take it off without leaving me with more wrinkles and fewer eyelashes. My second try yielded great results - Burt's Bees baby wash, olive oil and water. It wasn't an original recipe or anything, I'm just thrilled that I was able to avoid buying a small, expensive bottle of something I was convinced I could make myself.

Finally, we had our Mothers' Day on Sunday (delayed because half the family was at the Toronto Comic Arts Festival last weekend). Pancakes and Star Trek Into Darkness were my two requests and they were happily fulfilled. The pancakes were delicious and the movie had Zachary Quinto, Simon Pegg and Benedict Cumberbatch. 
I loved every single second of Star Trek...

SPOILER ALERT!!

It was fun, fast-paced and had snappy dialogue and lots of nostalgia. Also did I mention Zachary Quinto, Simon Pegg and Benedict Cumberbatch? 
It wasn't until I got home that I started to brood about the fact that there don't seem to be any women running Starfleet. And the movie fails the Bechdel test.
At the time, I didn't even notice. I blame it on Quinto, Pegg and Cumberbatch.

Angelina Jolie, mastectomies and choice

People keep asking me what I think of Angelina Jolie's prophylactic mastectomy and subsequent op-ed in the New York Times. I've let my thoughts simmer a little before putting them into words. It's hard not to react viscerally to such a dramatic story.

I wonder who'll play Angelina in the movie?

First and foremost, I want to say that what any woman does to her own body and to preserve her own health is her own damn business. Unless we are in her exact pair of shoes there are limitations on the right to comment. 

Secondly, I think Ms. Jolie's choice to go public, especially given her status as a Hollywood sex symbol, is very brave. Having a mastectomy is shame-laden for so many of us and discussing the procedure openly does a great service. I love that she chose to emphasize how, most of the time, the mastectomy is not major surgery and recovery can be fairly smooth. A woman without her "natural" breasts can adjust and go on living her life as she did before - even when her husband is Brad Pitt and what she did before was star on the big screen.

I think that Ms. Jolie made the right decision for herself, based on her situation and the resources at her disposal. How do I know it was the right decision? Because she is happy with it.

That being said, I do have a few things I need to get off my (ahem) chest. These are my thoughts, in no particular order:

• The vast majority of women would not benefit from genetic testing. We have no family history of breast cancer and do not belong to ethnic groups most likely to carry the gene.

• Immediate reconstruction is not an option for some women, nor is it the norm in Canada. For some of us, reconstructions is never an option, for physical or economic reasons.

• Reconstruction is major surgery. Some of us would never put ourselves through a much more serious operation, that may not be successful, just to meet a societal definition of "beautiful", or even "normal."

• The kind of nipple preserving surgery Ms. Jolie had is still new and not yet widely offered. In Canada, a group called Be The Choice is trying to change that. Melanie Adrian,the founder of Be The Choice had to see many doctors and fight hard to obtain this procedure for herself in 2011.  

• Many women do not have the resources to get the quality of care that made the process so easy for Ms. Jolie. Even in Canada, where we have theoretically universal health care, there are geographic and socio-economic discrepancies that affect treatment and recovery.

• Access to testing is also very restricted, largely because the BRCA1 and 2 genes (the ones that can mutate and cause breast and ovarian cancer) have been patented by a company that restricts its use and ensures that the cost remains high. The patenting of genes is an odious and frightening practice. I'll elaborate on that and share some resources in a future post.

Every woman needs to make her own decision about prevention, surgery and treatment. What we all should agree on is that these decisions ought never to be restricted by available resources, ignorance or the greed of big corporations.

Want to read more? Here are some of my favourite posts, offering insight from different perspectives:

"Still Boobless", on Insert Boobs Here, a blog by Sarah Merchant who was diagnosed with metastatic breast cancer at 28.

"Angelina Jolie's choice not the only one" by Joan Walsh, on Salon.com.

"Angelina Jolie's Bilateral Prophylactic Mastectomy - If She &  I Could Chat", on Nancy's Point, by Nancy Stordahl who lost her mother to breast cancer in 2008 and went through the illness herself in 2010.

"Preventative Mastectomy: Angelina Jolie's Very Public Choice" on BlogHer by Contributing Editor Laurie White.

what it feels like to learn you have a brain tumour, if you are me

I was going through some writing from last fall and I found this. I wrote it, in response to a prompt - "Write about falling" - for an online writing class I was taking. Reading this brings me right back to how I felt when I heard the news that the cancer had metastasized to my brain. I share it now because I think it might resonate with anyone who's every been blind-sided with unwelcome news.

“Your CT scans were fine.”

You breathe a sigh of relief.

“But the MRI revealed a spot on your brain.”

And with those words you start falling. You feel the floor crumble beneath you and the sounds of talking fade as you slip away. You're vaguely aware of you own voice, sounding oddly calm, as the faces in the room grow blurry.

All that was solid rushes by and your lungs gasp for air and yet you move more slowly than you would have thought possible. The room, your spouse, the spot of egg on your doctor's tie, the clock on the wall with the time you had noted (you'd been annoyed that your appointment was starting twenty minutes late) recede into the tiniest of specks and the darkness engulfs you.

Falling feels scary and good at the same time. You are panicked but somehow you know that to fall away from your present is as good an escape as any.

And then a voice cuts through. One you know and love. A voice that has brought you back to reality so many times in the past.

And you land, far below where you started, with a thud.

You pick yourself up, reach back up towards those fluorescent lights you've always hated. And slowly, deliberately, reluctantly, you haul yourself back and to sit in the chair on which you started. You don't know what was said in your absence. No one seems to have noticed you were gone.

You find out later that your head nodded, your lips moved and words came out while you were falling. An appointment was booked, reassurances were made and a promise that a plan would soon be in place.

You remember nothing after the words, “spot on your brain.”

It doesn't matter. You've been through something like this before. Someone will fill you in on what you missed while you were falling.

funny, funny troll spam

Has anyone else noticed a new trend in blog spam? Usually spam comments tell me how brilliant I am, before linking to the stuff they sell. Then there are the ones about sex and related paraphernalia - often gibberish and including phrases like "home coffee maker porn shoes cologne gnocchi". 

Recently, I've had a couple that sound like trolls - accusing me of letting down my readership with laziness or self-pity. This appears to be a new spamming strategy.

My last post, "i don't have a brain tumour",was a photo of a bottle of Prosecco and a glass full of the bubbly stuff. There was not text, as I felt the title and the image were pretty self-explanatory. Before I delete all today's spam into oblivion, I thought I'd share this shining example of incongruous, inappropriate spamming:

"The very next time I read a blog, I hope that it won't fail me just as much as this particular one. After all, Yes, it was my choice to read through, nonetheless I truly believed you would probably have something interesting to talk about. All I hear is a bunch of crying about something that you could fix if you weren't too busy searching for attention. Feel free to surf to my web page: xxxx"

Ha! I'm sorry my celebration was so un-interesting, depressing and attention-seeking.Thanks especially for inviting me to check out your site, even though I'm so disappointing.

Do these links ever work?

I loathe spam but this totally cracked me up. 

i don't have a brain tumour

better than words

A few weeks ago, I took my bike in for its spring tune-up at my favourite bike shop. 

I love getting back on my bike again. I don't drive (which is a whole other story), so riding my bike gives me a sense of independence. Riding has always given me a feeling of freedom and on good days, I renew the euphoria of childhood as I make my way around the city on my own steam.

Also, it's a lot more efficient than riding the bus and really good for my physical and mental health. 

My bike is a tank, weighing in at 42lbs and very solid. I sit upright as I ride it and it feels tremendously safe. However, I managed to tip it over while riding a couple of times last year. This tune-up included a new bell and fenders because mine were broken and they fixed the built-in basket which had been bent out of shape when I fell.

As he was bringing me my bike, the mechanic - usually polite but terse - asked, "Do you have kids?"

Surprised, I answered in the affirmative. 

"Do you lend them your bike?"

"Um..no."

"Because it was pretty banged up. It's usually kids who do that."

I admitted sheepishly that I was the one who had fallen and done the damage. I was tempted to just leave it at that but added, "It turned out that I had a brain tumour that affected my balance. The tumour is gone now and my balance is OK."

Without missing beat, the guy lifted his hand into the air. We bumped fists. I smiled widely, paid my bill and rode home with a light heart.

Some people know exactly what to say - even when they don't use words.

screening the sun like an ostrich

As is pretty normal around this parts, we seem to have gone directly from winter into summer, with no real spring in between. And we also seem to have gone from winter boots and coats to the danger of sunburn.

I've been in denial about all this but I noticed a bit of pink on my arms today and realized I need to start applying the sunscreen. You'd think this would be simple but it's really not.

I am extremely ambivalent about sunscreen. It's important as a means to help prevent cancer but much of it is filled with carcinogens. The kind that isn't can feel like rubbing on bread crumbs and leave cement like globs on your skin. I found one a couple of summers ago that was organic and everyone liked but it cost $52 for 147ml (5oz). In my house, one of these tubes didn't last very long.

I think I can justify something a bit more expensive that I use sparingly on my face but I need something that the kids can apply liberally without me hovering over them muttering contradictorily about coverage and waste (Blogger says "contradictorily" isn't a word but I think it ought to be and I'm going to use it).

Our fallback seems to be buying sunscreen with good sun protection power and recommended by doctors but still loaded with chemicals. Or to use whatever's handy and hope for the best.

I'm sure there is a better solution out there. Do you have an affordable, effective and safe sunscreen you can suggest? One that's good for sports? Good on your face?

I think I need to pull my head out of the sand. That might keep my head from getting sunburn but it's not a very practical way to spend our fleeing summer.