Tuesday, November 25, 2014

#BlackLivesMatter

I don't write in this space very often these days and I don't know how many people still read my words. I'm not sure if I've done a good job of expressing myself. My friend made me realize last night that I have a responsibility to use the platform I have, to say something to anyone who might be willing to listen.

Yesterday evening, I sat down at the computer to check Twitter, as a stalling tactic before cleaning the kitchen. It was well past midnight when I stood up again.

I was reminded as soon as I logged in that the decision of the grand jury in Ferguson, Missouri - about whether or not to indict the police officer who killed a young unarmed black man - was due to come down shortly. In the end, it took a couple of hours for the announcement to be made. Though most people commenting in my Twitter feed were not surprised by the outcome (the delay in announcing had made many suspect that the result was a foregone conclusion), they were outraged. This was exacerbated by the terrible way in which the grand jury handled the release of the verdict: at night, with many hours of anticipation during which the world saw heavily armed soldiers and military tanks line the streets of the town. The lengthy speech made by the prosecutor seemed designed to fan the flames, as he first blamed social media and then further trashed the reputation of a young man who is no longer alive to defend himself.

Last night, I didn't comment much, choosing instead to share the words of others, mostly Black women and men directly affected by this decision and overt and systemic racism. I felt it was my place to listen and to share their words. You can read all the Tweets I chose to share on my Twitter feed. There was so much more and I could not look away.

Eventually, though I had to go to bed. One of the last things I saw were the words of a Black friend, saying that it's not enough for those of us with loads of white privilege to express solidarity. We need to do more.

She's right.

We need to do more because of what happened in Ferguson.

We need to do more because a 12 yearold Black boy with a toy gun was shot by police officers in a neighbourhood park.

We need to do more because there are so many more stories like those I've just mentioned that don't even make the news.

We need to do more because racism is alive and well at home and around the world. And yes, that applies to those of us in Canada, too.

I'm still figuring out what “doing more” means for me. Here, to begin, are my own personal guidelines for dealing with racism in my world. I don't always succeed in adhering to them but I'm working on it:

Speak up when I see racism in my own community, city, country. Every time, even when it makes those around me uncomfortable.

Talk to my kids about what happened in Ferguson and about racism. Often. And not just when it results in someone's death.

Listen when others share their experiences. Ask how I can be supportive. Follow through.

Never be defensive or fearful when others raise the subject of race. Accept that when a person of colour says, “racism exists here”, “that is racist” or even “what you did was racist”, they are stating a fact that hopefully can be fixed and not saying that I'm an irredeemably horrible person.

I'm sure there's more. Like I said, I'm still figuring it out.

Every year, the adults on my spouse's side of the family make donations in each others' names instead of giving Christmas presents. In past years, we've donated to the Stephen Lewis Foundation, EGALE,  the Canadian Breast Cancer Network, the Ottawa Hospital Foundation and the Ottawa Food Bank. This year, I'd like to propose that my family direct our donations to those working to bring an end to racist inequality and injustice. I'd suggest that those of you who can, consider doing the same.

And if you have advice, as to where donations should be focused, please share. 

Further reading:






Tuesday, November 04, 2014

my living legacy

On October 1st (still playing catch up, bear with me), I had the privilege of being part of a lobby day organized by the Canadian Breast Cancer Network. Along with Niya Chari (CBCN's Government Relations Manager) and CBCN President Cathy Amandolea, I met with  Members of Parliament for the NDP, Liberals and Conservatives.

Specifically, we spoke of the need for greater awareness of metastatic breast cancer and funding and research needs, such as steering the focus away from early detection towards finding a cure. We addressed the fact that there is no centralized database of Canadian cancer statistics (we rely heavily on American data) and the need for a Metastatic Breast Cancer Awareness Day.

We ended the day with a reception on Parliament Hill that was attended by representatives of all political parties, despite being a very busy evening on the Hill. Daniel and Tim came too, which made me happiest of all.

A highlight of the evening was the video "Living Legacy" (pasted below). It's pretty powerful.



I was supposed to be a part of the video but I had to cancel at the last minute (I'll explain why another day). I think it's pretty complete without me. These women are incredible and just as impressive and lovely in person as they are on screen.

It was really hard to tell my story over and over. I wanted to do it though, because I know how much more effective it is to generate interests when people can attach a real person to an issue. For the most part, I really felt heard though. Cathy and Niya were brilliant and I think we did a good job getting our message across.

Metastatic breast cancer is often invisible, especially in October. This day meant a long way to making us be seen and heard.


Monday, November 03, 2014

late to the party

My last post was called, "just under the wire." I sense a theme developing here. Perhaps it's better to get things up at the last minute or even late, rather than not at all.

Last Friday was Halloween and it was a milestone for my family - the first time in 16 years that my spouse and I were home together all evening. So weird.

Sacha dressed up for school, then helped a friend with his haunted house and watched Shaun of the Dead. He ended the evening with a midnight showing of the Rocky Horror Picture Show. We didn't actually see him from the time he left for school in the morning until we heard him and his friends come in after the show. We got some of the details over bagels the next morning (a few of the boys slept over). It sounds like it was a great evening.


Bob from Bob's Burgers


"Best Group Costume"

For the first year ever, Daniel went Trick or Treating without an adult. Two of his friends came over after dinner and they went to collect two other friends in the neighbourhood. They trick-or-treated for a while and then went to one boy's house to watch The Nightmare Before Christmas and Beetlejuice. Daniel came home tired and euphoric, with the smallest bag of candy I have ever seen on Halloween. Clearly far more time was spent walking and talking then actually trick or treating. It sounds like a great evening.


Space Cowboy, inspired by Sparks Nevada


The division of labour in our house was always such that I stayed home and gave out candy and Tim went out with the boys. This was my choice. Perversely, now that I will never get the chance, I wish I had gone out trick-or-treating with my kids at least once.

It wasn't a relaxing evening in our house. Toby, the dog we adopted in May, barks when the doorbell rings or someone knocks. This happens when he thinks he hears knocking (the other dog might just be scratching herself) or when he hears the doorbell on TV. Sometimes, he even barks when he hears somebody come down the stairs in the house. So Halloween? Drove him crazy. And he whipped Lucy into a frenzy. By the end of the evening my nerves were raw but the dogs seemed pretty happy. I think they had a great evening.

Gratuitous photo of Lucy (the co-barker) from last Halloween. The dogs wouldn't sit still
long enough for a photo in this year's Halloween hats.


I'm pleased to announce that I didn't eat any Halloween candy this year. But I might have had a whiskey. And some cheezies. They go surprisingly well together





Friday, October 31, 2014

just under the wire

It's the very last day of "breast cancer awareness" month and I have a post up at Mom 2.0 Summit, "Pinkwashing won't cure breast cancer":

"I care about bringing an end to breast cancer. As someone who has lived with the illness since first being diagnosed in 2006, I care very much. However, I don’t think buying fried chicken in a pink bucket or a pink screwdriver is going to change very much at all."




“Women with metastatic breast cancer never really fit in with others in the breast cancer community. To those who finish treatment, embrace the word “survivor," talk about “winning their battle" and never looking back, we represent the worst that can happen. Who wouldn't want to believe that if you stay strong through treatment, stay positive and do everything right, you will get to leave cancer behind?”

I hate pink ribbons and pinktober for a whole host of reasons that I realize I can now rattle off in a two minute rant. Ask me some time. It could be my new party trick.


Thursday, October 30, 2014

some good news for a change

Something good was announced last week and I nearly missed it.

A news release from the Canadian Breast Cancer Network landed in my inbox last Wednesday. It contained the fantastic news that Kadcyla (formerly known as TDM-1) has been approved "on a time limited basis" for "HER-2 positive, metastatic breast cancer patients who have initiated or completed at least two lines of HER-2 targeted therapy and who have not received Kadcyla in previous lines of therapy."

This is very positive news. As I wrote in back in June, the drug was initially only approved for women in their "second line" of treatment which would exclude me. This despite the fact the many women in later phases of treatment have responded enormously well to the drug (each stage of chemotherapy/targeted therapy treatment is a "line." If one line fails or stops working, a patient is moved on to the next. I have been in my second line of treatment since being diagnosed with metastasis in November 2007.)

In other words, this announcement means that I, a woman with Her2+ metastatic breast cancer, will potentially be eligible for Kadcyla when if Herceptin fails.

This has been a rough week in Canada. The events of last Wednesday completely eclipsed this news, even for those of us who care deeply. I live in Ottawa. My kids' schools and my husbands office were locked down all day. My brother-in-law works at the House of Commons and was very close to where bullets were fired. I spent the day glued to my computer screen, watching the news and refreshing Twitter. Despite a host of rumours, it was a great relief to learn at the end of the day that there had only been one gunman but for much of the day, we just didn't know. It was harrowing. And such a tragedy.

I decided to wait for the dust to settle to post this little bit of news but then another big, sad story erupted on the weekend and I once again found myself glued to social media. Last night, there were some I follow posting pictures of kittens and puppies on Twitter, just to have something more positive to in their news streams. 

My contribution to adding #somethingnice to my Twitter stream. A dog in  Hallowe'en costume!

So while the dust hasn't settled, I wanted to share my own little bit of something positive. I'm just left wondering what "for a limited time" means. Will the province then withdraw coverage? Or is this like a trial to see if it makes sense to continue?

The Canadian Breast Cancer Network calls this "a step in the right direction." Let's hope the province takes more and more permanent steps soon. Let's keep the good news coming.

Tuesday, October 28, 2014

so i voted

Yesterday, municipal elections were held across Ontario. We elected our mayors, city councillors and school trustees. And I almost didn't vote.

I had a few friends ask me, in the days before the election, "Who are the progressive candidates? How are you voting?" I was at a loss to answer.

The truth is that our mayor, while not running unopposed, might as well have been. And while I acknowledge that he's very hardworking, I'm not a big fan.

My city councillor seems like a decent enough guy but I have not found him to be very responsive, the couple of times I've had to contact his office. I've also heard interviews with him, where he seems to arguing both sides of any given scenario. I'm not sure that makes him very effective at city hall. At any rate, he too seemed to running without any real opposition.

The candidate for school trustee was literally running without opposition, as he was acclaimed.

In my corner of Ottawa, the election was not very exciting and participation didn't seem compelling.

Then my kids overheard my spouse and I talking about the election and asked why I was considering not going to the polls on voting day. I had a hard time coming up with an answer that didn't sound apathetic and lazy to my own ears.

In 1988, I was part of an exchange program, that took me first to Alberta and then India. While we were overseas, a federal election was going to take place. At that time, people out of the country for an exchange program could not vote in advance polls or cast a special ballot (this loophole has long been changed). I was bitterly disappointed, as this would have been the first election since I had come of age.

The other thing I remember is that in my group of 7 Canadians (and seven Indians who looked on with interest), I was the only one who cared that we couldn't vote. As someone who bitterly opposed the sitting government, I wanted to have my say.

I have come to understand the perspective of some of my friends. We are not going to affect great change solely through the ballot box. I guess I've just decided that the ballot box is still important.

My kids are interested and engaged with the world around them. I don't want to send the message that their mother is apathetic or so jaded that she couldn't be bothered to walk three blocks to the polling station.

So I picked up my youngest from school yesterday and took him with me to vote. He watched me fill in my ballot and submit it for tabulation (electronic! Can anyone explain to me why we don't have this at the federal level?). In the end, I filled out my choice for councillor on the single ballot but didn't vote for any mayoral candidate. On the way home, we discussed how I had filled in my ballot and my reasons for making the choices that I did.

All over the world there are those who are denied the right to vote. As a woman, I have only had that right for a short part of my country's history. Showing up at the polls may not change much but I'm glad I have the chance to do so. And I want my kids to understand the range of options they can use to make their voices heard, even in a tiny way.

Friday, October 24, 2014

hold the duct tape

"Women with disabilities often experience health disparity. For instance, in a 2010 study of the barriers preventing women with disabilities from getting screened for breast cancer as often as is recommended, is, believe it or not, lack of physician recommendation. In other words, doctors don’t talk to women with disabilities about getting screened for breast cancer. This is often also the case for pap tests. In a Canadian study (PDF), women with disabilities reported often only receiving healthcare in the narrow area of what is directly related to their disability."

Did you know that women with disabilities often face huge barriers when it comes to breast cancer screening? A conversation with my friend Lene left my jaw on the floor (and I truly thought I'd heard it all). She's written about it on her blog, The Seated View. And be prepared, the duct tape reference is not a joke.