a man, a boat and some respite

I was listening to the radio this morning and I heard an interview with a man who was sitting in a boat outside his flooded home in Calgary, fishing. He said that his furnace, freezer, everything in his basement and much of his first floor were submerged in water but he was making the best of it.

"People pay thousands of dollars to do what I'm doing. How often do the fish come to you?" he asked the interviewer. "I can sit and be miserable or hang out like this and keep a smile on my face for a couple of days."

I was quite taken aback with this interview. At first, it seemed like an incomprehensible attitude to have in the face of such tragedy. But as I thought about it, I realized that not only do I understand, I can relate.

I don't actually believe that the guy has been sitting in his boat and smiling for the last few days, or that he's immune in the face of loss. He's just found something, in spite of all that's happening, that makes him happy. No matter what is going on in any of our lives, there is hopefully at least one good thing that we can cling to like a life-raft, something that brings respite while we gather our strength to face all that lies ahead.

I would never choose to have been diagnosed with cancer. I would never wish what I've been through on anyone. But there have been so very many good things - the friends and loved ones who've rallied around, things I've learned about myself and a new appreciation for all the good things - that have sustained me through the darkest times.

I hope it goes without saying that I don't think everything happens for a reason. The floods in Alberta have been horrific and terrifying. This is a tragedy of enormous magnitude.

It's just that this morning I listened to that guy, fishing in his boat while his home was underwater and I felt that I understood him.

what did i do wrong?

OK internet, help me out here:

I've been looking for a recipe for healthy snack bars, to replace store bought "chewy" bars. The bars can't contain nuts or peanuts.

My nutritionist sent me a recipe for Chocolate Date Protein bars. I made the bars, following the recipe exactly and ended up with a very, very tasty paste - too sticky to be rolled into balls, let alone made into bars.

She's away indefinitely and I can't find a comparable recipe online. Can someone figure out how to give these bars more integrity?

I used ground hemp. Could that be the problem? Is it possible to buy whole seeds? Would that help?

I don't want to post someone's recipe online but you soak the dates and then blend them with the cocoa and sweetener and then add the hemp seeds for a few seconds at the end. There's no cooking - you just chill it in the fridge.

Thoughts?

I'm also in the market for healthy and nut-free snack bar recipes. Any thoughts there would be appreciated as well.

learn how to be a better advocate

The Canadian Breast Cancer Network has announced that it will be holding an "Advocacy Training Session" in Halifax, Nova Scotia on September 13-14:

"The advocacy training will focus on the issue of metastatic breast cancer and will offer participants the opportunity to enhance their communication skills and effectively deliver strong advocacy messages to a wide variety of audiences."

Priority will be given to women living with metastatic breast cancer, primary caregivers of those living with  mets and to applicants from the Atlantic Provinces. CBCN will be covering all expenses including, travel, accommodations and group meals for those who are accepted to participate.

I'm applying. I think it's critical that women living with metastatic breast cancer join forces to bring attention to our issues (including the paltry lack of funding for metastatic breast cancer research) and to support each other.

Hopefully, come September, some of us will learn how to feel a little less lonely and a little more empowered. And we'll have learned how to share all that with others.

To obtain an application, or for more information contact  Rebecca Wilson at rwilson@cbcn.ca or 1-800-685-8820 x225.

Please share this post with anyone who you think might be interested.

the good side won

Today sanity prevailed, justice was served and the good guys won.

I don't get to say that very often.

In a unanimous decision, the US Supreme Court ruled today that genes cannot be patented. They were specifically addressing the patenting of BRCA1 and BRCA2 genes by Myriad Technologies, a company that claimed the right to conduct all testing for genetic predisposition for breast and ovarian cancers.

The impact of Myriad's patent was widespread. Several Canadian provinces were ordered to "cease and desist" testing of the BRCA genes. Instead, the provinces were ordered to send the genes directly to Myriad labs, at a dramatically increased cost. Disregarding the order has put Canadian provinces and hospitals at risk of being sued, rendered testing more expensive and, in some cases, halted testing completely.

Patenting also has the potential to deter researchers from engaging in research involving patented genes.

On behalf of the Supreme Court, Justice Clarence Thomas wrote  “A naturally occurring DNA segment is a product of nature and not patent eligible merely because it has been isolated" and ""Myriad did not create anything. To be sure, it found an important and useful gene, but separating that gene from its surrounding genetic material is not an act of invention."

That's pretty clear. And it should have been obvious. You can't patent parts of our bodies.  But the Association for Molecular Pathology, the American Civil Liberties Union, Breast Cancer Action and some very brave women had to take it all the way to the US Supreme Court.

Actress Angelina Jolie brought worldwide attention to the genetic testing, when she wrote an op-ed last month for the New York Times in which she wrote about choosing a prophylactic double mastectomy after testing positive for a BRCA gene. Hopefully, this ruling will eventually mean that more women can choose testing that will allow them to make more informed decisions about their own health.

Want to know more? You can read the Supreme Court ruling for yourself or click on the links throughout this post.

I think this might be the first time I've agreed with Clarence Thomas on anything.

Here's a very short (less than two minutes) , very effective video by the ACLU that explains why you shouldn't be able to patent our genes:

justifiably annoyed or overly sensitive? you tell me.

I read an article a little while ago about a Conservative politician who just finished treatment for breast cancer. The article was probably meant to make me feel inspired but instead I just go angry.

I felt guilty for not being more charitable (is that a word used in this sense by anyone other than those raised Catholic?) and disappointed in my own lack of empathy.

I bookmarked the story and decided to postpone writing about it until I could understand my reaction.

It's been a couple of weeks. I reread the article and got angry all over again.

I work very hard at not being judgmental of others' choices. This is a hard thing when you hold strong opinions but I do try my very best to underline that I've made what I consider to be the best choices for me. So why am I so annoyed at the choices of someone else?

Paula Peroni (the Conservative politician from Sudbury) is to be commended for her strength. Her approach to diagnosis and treatment seems to be very different from my own. She wore a wig, never stopped working, and told no one until after she had finished treatment. She seems most concerned that someone will think less of her for having had cancer. Perhaps that comes with being in politics.

While Peroni seems to stress that these were the right choices for her, the writer of the article seems to frame them as a goal to which we all should aspire. And Peroni herself seems to frame the path she chose as being the most virtuous:

"When you tell people you have cancer, "you put a responsibility on them they didn't ask for," said the longtime trustee with the Sudbury Catholic District School Board.

They care about you and worry about you, so you don't want to add to their burden.
'It's nice to tell people (about it) when I'm on this side of it so they don't have to do the guilt and the worry or the condolences or whatever it is they feel is necessary,' said Peroni."

We all have a right to privacy but someone who chooses to stay private is not morally superior or more altruistic than those of us who make our struggles more public. I don't think it's just a "burden" to share our stories. In my experience, people genuinely want to help and I think that helping each other makes us stronger individually and together.

There are many kinds and cancers and as many kinds of treatment. Some people get sicker than others from the illness and its treatment. Some need more help from outside the immediate family, for a whole host of reasons. There is no shame in this.

And finally, perhaps it's my own metastatic status that colours my response. We are immersed in a culture of pink and a belief that you've just go keep a smile on your face, go through it and move on - and if you can do it without missing a step, you are to be applauded. Those of us with mets very often feel invisible.

Is this all just my own baggage speaking? Go read the article. Come back and tell me what you think. I'd love to know.

Possibly gratuitous and definitely snarky addendum: 

"Peroni believes she is where she is supposed to be and if there was ever a time for Sudbury 
to go Tory blue, it is now." Does this "work that needs to be done" involve deep cuts to the health care system from which she has so profoundly benefited?

doors open - an excuse for frivolity

I have a long overdue post up at Frivolity (getfrivolous.com). We had such a good time at Doors Open Ottawa!

Daniel "driving" an OC Transpo bus.

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.

getting a little help to ease the way out

Few topics are as controversial as assisted suicide. It's currently illegal in Canada but recently, a Canadian woman with an irreversible debilitating illness travelled to Switzerland, where the group Dignitas provides assistance with suicide, legally.

I think most of us have contemplated our own deaths. When you live with metastatic cancer, it's impossible not to do so. I'm hoping that moment for me is in the distant future, but I find the prospect of a long, lingering death from cancer to be terrifying. However, is it more terrifying than the prospect of death itself?


I differentiate that from euthanasia because I think the term I use clarifies the willing and conscious participation of the person facing death. Am I kidding myself that this is a distinction that can be maintained? 

What would you want to do when the end comes? 

I'm certain that I believe assisted suicide should be legal. I don't know what I would do, if faced with a choice.

10 years old

Dear Daniel,

Yesterday, you turned 10. In honour of this momentous event, I thought I would list just a few of the things I love about you:

You cherish being funny. Your humour ranges from the brilliantly witty to jokes that have a lot to do with farts.

You are sensitive and full of empathy.

You are fully awake from the moment you open your eyes, every day. Sometimes, you complete the sentence at dawn that you started before you fell asleep the night before.

You revel in making others smile. You take great pride in being "a nice guy."

You will make up silly walks the whole way to school.

Some mornings, you say "I'm awesome" or "I love being me." These words fill my heart to bursting with happiness.

You have your own sense of style and the confidence to be yourself.

Your enthusiasm for life and it's adventures is completely contagious. I enjoy almost everything more when I do it with you.

You are a voracious reader. You love words and language and you use them with great dexterity (if you don't know this word, you can go look it up).

You wear you heart on your sleeve. The people you care about know they are loved.

You make me happy every day of my life.

I love you to the edge of the universe and back, multiplied by infinity.

ask and ye shall.

Last night, I had dinner with my good friend Sharon, who has twice been treated for breast cancer. She's well now but we got to talking about asking for help during treatment.

We both had teams of people, providing all kinds of support during our health care crises. We were fed, entertained and accompanied to appointments. My kids were distracted and cared for, my dog was walked. My friends even paid to make sure that someone would come and clean my house while I was recovering from surgery.

To me, feeling healthy and strong again means requiring a lot less help. I speak with my oncologist over the phone. I breeze through echocardiograms. I walk or ride my bike to appointments. I even go to my regular Herceptin treatments by myself most of the time.

I feel fine about all this. I like being independent and I don't want to ask people for support when it's really not needed.

But sometimes it is.

On May 2, I have a brain MRI. These are always fraught with anxiety for me. My head is wedged into place and then encased in a small tube. And it's unbelievably noisy. I'm reasonably good at self-soothing and yogic breathing but as I force myself not to mind the physical discomfort, I start to worry about results. What will the radiologist see in my images? What can the technical staff see, as they test is being done?

There is not enough meditation or Ativan in the world to make this a pleasant experience.

Tim has come with me to my last few MRIs but on May 2nd we have a child care conflict. I was contemplating going alone when I was reminded by my conversation at dinner that there was another option: asking for help. 

When I got home, I logged on to Facebook:

Within minutes, I had a friend who offered to go with me and someone who said they'd be backup. And there were so many others who couldn't go but who sent their love and support or said they'd be there with me in spirit.

And they will be.

Note to self: Ask for help, even if you think you don't really need it. You'll be very glad you did.

By Peter H Reynolds.

Found via http://www.themavenofmayhem.com/.

going to Gil's Hootenany on May Day. I plan to sing my heart out.

I have a new post up at Frivolity about how I'm going to sing my little heart out with a bunch of other people.

"Despite the fact that I've been told since I was young that I can't carry a tune, I love to be in the middle of a room of voices raised in song. It feels to me like being embraced. Usually, I start with mouthing the words and get braver as the event continues.This May Day, I'll sing right along with everyone else, in memory of a wonderful activist and lover of music. If you live in the Ottawa area, come join us at Gil's Hootenanny in singing "Songs of Protest and Hope" on May 1st."

You can read the rest of this post at getfrivolous.com.