how he moves in the world

My baby turned 8 on Friday. I love him so much.

i could lose myself in this.

Actually, I have.

Someone posted a link to Hyperbole and a Half on Facebook this morning and I was so tickled (and so willing to procrastinate that I got sucked right in. I now have no time to write but I think you'll enjoy her more anyway.

not about the Beatles

I don't have the energy to write anything of substance today, so I thought I'd share a little bit of silliness from my writing class last night.

Our teacher instructed us to "write about the Beatles" and this is what happened for me:

"When I think of the Beatles, I think of the Rolling Stones. I was a teenager in the 80s and both groups had already passed into iconic status. Which band was better in my mind? The answer, to my adolescent self anyway, seemed obvious.

Paul was cute. John was smart (and tragic) and I couldn't even imagine what the other two guys looked like. But Mick...Mick was hot. With those eyes, those lips, that hair. And those hips.

I couldn't have told you whose music was better, more complex, which group would have staying power. 

I just knew that the Beatles were pretty but Mick made me feel warm in places this Catholic girl wasn't supposed to think about."

bittersweet moment

Yesterday afternoon, my baby fell asleep on my chest.

He's almost 8 now and it had been years since this happened. He had two late nights followed by two early mornings, and he'd been tired and cranky. I suggested we curl up in bed for some quiet time. He had a new book to crack open and he was keen.

But after awhile he grew restless. We talked about putting on a movie. I told him I felt tired and lazy. He said he did, too. After a few moments of lying quietly, his breath began to slow.

Suddenly, he sat up, “Mama, could you stop feeling so lazy. I thought we were going to watch a movie!”

“We could do that,” I answered. “But I thought we were going to have a little snooze first.”

To my surprise, he said, “OK. I'll have a little snooze.” He put his head on my chest, and within seconds was sleeping soundly.

We lay there like that for more than an hour (at one point he woke up, said “Where'd my book go?” I said, “You've been sleeping.” He said “Oh!” and went back to sleep), and I was blissed out. I was happy to have my book within reach but I spent a long time just looking at him, listening to him breathe and loving the feel of his weight on my chest.

As I said, this was the first time this had happened in years. And it was quite possibly the last.

All too soon, he woke and we went on with our afternoon. If I close my eyes and listen to my own slow breaths, I can still feel his weight on my chest.

i can relate to this...

...and so can, I would wager, anyone who has been harassed by  condescended to infantilized by dealt with an insurance company on health related matters.

Especially if you have been on long-term disability for any length of time, you can expect regular correspondence. Blogger Katherine describes this experience:

"But as sure as the swallows return to Capistrano, every March CIGNA sends me information on its Cancer Support program. Last year’s began “Good health is a gift.” This year’s reads like a grade school report:


Dear KATHERINE O’BRIEN:


The American Cancer Society estimates that two men and one in three women will face cancer in their lifetime. Although these are scary statistics, CIGNA HealthCare wants you to know we’re here to help…"

Most of us just sigh, groan, maybe yell a little and then toss the letters into the recycling bin (unless it is one of the letters making demands to send information we have alread sent them SEVERAL TIMES. Then we scream a little louder, call the company, get transferred to voice mail, leave a message and then never hear back, send the info as requested and then get ANOTHER LETTER requesting the SAME INFORMATION and scream some more. Or maybe that's just me.). After years of this kind of correspondence, Katherine decided to write back (CIGNA is her insurance company):

"Dear DOUG:


Thank you for your letter of March 2010! I couldn’t agree more that good health is a gift! I was blown away that you want to help me make the most of it.


It was gratifying to know that “as health care claims are submitted to us, we review them and identify steps you might take to help improve your health.” Gosh. I feel a little guilty. I mean, you are poring over my health claims and I am doing bupkis for you. Maybe I could clean out the coffee room fridge in Bloomfield some time? Police the parking lot? Just let me know.


As you might have gleaned from your research, I have metastatic breast cancer. My doctor says that in 2010, there’s no cure for metastatic breast cancer. Of course that’s what she said in 2009. So I do intend to doublecheck in 2011. I will keep you posted...


...I think it is important to take care of me, too. I see Dr. Gaynor once a month. It might be hard to see her more regularly than that. Unless she wants to join my mahjong group. I will make inquiries."

You can read the rest of the letter and Katherine's post about it on her blog, ihatebreastcancer. Thanks to Anna Rachnel (ccchronicles) of The Cancer Culture Chronicles for telling us about Katherine's letter via Twitter.

my kids are alright

I had a dream a few nights ago.

My kids were in a giant flash mob, dancing their hearts out, surrounded by dozens of other kids and adults. They were exuberant and focused, their movements fluid and in synch with those around them. My heart swelled with pride and joy.

I learned that the flash mob had been created to drum up excitement over an upcoming performance. In a couple of hours, my kids would go on stage and perform. I could tell they were ready.

Then I was handed a note. My own performance was scheduled for right after theirs. I was wholly unprepared. I hadn't even looked at my script. I was rushing off to find it when my alarm went off.

Sacha was in a play very recently. And they did organize a flash mob a week before the performance, as a form of advertisement. And Sacha performed beautifully. My heart did swell with pride.

In part, my subconscious might have been remembering the play but I choose to believe that I was also sending myself a message.

Life with metastatic breast cancer is filled with uncertainty. But no matter what happens, my kids will be fine. They are smart, talented, resourceful and resillient. They have friends and family who love them. My kids will be alright.

vote early, vote often

I watched last night's English language election debate with interest. I was shocked at how quickly the two hours passed, although this was greatly aided by the fact that I wrote and read a steady stream of commentary on Twitter and Facebook (sorry to my followers and friends who don't give a damn about the Canadian federal election!). It helped me to keep watching without blowing a gasket. I felt like I was at a bar with friends hooting and hollering, except that I was in my basement drinking tea with my son and my spouse (another advantage to Tweeting during the debate was that I had to keep looking down at my Blackberry. This kept the orange decor from searing my retinas and Harper's cold eyes from turning me to stone).

I thought that all the opposition party leaders did well. Duceppe delivered the best opening line ("Congratulations, Mr. Harper, for answering your first question from a citizen during this election campaign.") but petered off  towards the end. It's got to be brutal doing a two-hour debate in one's second language. By and large, I find it a pity that the Bloc only speaks for Quebec, as they are so consistenly solid on most social issues. They lose me, however, when it comes to questions of immigration and multi-culturalism. Nationalism and multiculturalism don't go so well together.

Layton was calm and measured and many people with whom I've spoken found his performance to be much stronger than in previous debates. Personally, I would have liked him to be a bit more aggressive, as he left it to Ignatieff to drive home the points that are near and dear to my heart. Kudos to him for mentioning proportional representation and for this seriously funny (but cheap) line: "I don't know why we need more prisons when the crooks seem so happy in the Senate."

I thought the evening, however, belonged to Ignatieff. He stayed on message (although I found "You shut down what you can't control" to be more effective the first time he said it than the tenth) and was forceful and articulate. He hit all the right notes on all the key issues and challenged Harper on gun control, immigration, crime, health care and transparency. He looked positively Prime Ministerial (my favourite Iggy line of the night, "This isn't bickering Mr. Harper. It's democracy.")

Is any of this going to change my vote? Absolutely not. I remember when the Liberals were in power and they were singing from a different songbook then. Happily, my NDP candidate is an incumbent who has done an excellent job, locally and for the country. I'll vote for Paul Dewar and I won't even have to hold my nose.

But if I lived in a riding where the race was one between the Tories and the Liberals? I just might be voting strategically this time around.

Perhaps none of it will make a difference though. All the pundits who did wrap-up commentary last night seemed to agree that Harper had won the evening. Even my beloved Chantal Hébert was unhesitating in her praise of Harper's performance. Did Canadians watching at home feel the same way? Did undecided voters? Do any undecided voters watch the debates?

I can't recall a time when I have felt as strongly about voting. I keep reading assertions that if all eligible voters under 25 and all women voted, Harper would be out on his ass.

Let's make that happen, shall we?

without judgment

Every day is filled with an overwhelming number of choices. Some are fairly trivial, others will have lasting impact. Some days, I'm so overwhelmed by the choices I must make that I long to crawl back into bed and pull the covers over my head.

When I was younger, I saw the world in terms of black and white. There were wrong decisions and right ones. The rules of engagement with life seemed fairly clear. And I thought I had most of the answers.

Sometimes, I wish I still saw life that way. But the truth is that the world is filled with shades of gray. When faced with a choice, two people can make completely different decisions and sometimes, both can be making the right choice.

Don't get me wrong. There are still many clear cut choices to be made and situations where it ought to be obvious what is just and what is right. But with most of our day to day choices, things just aren't that clear.

So I have become much less judgemental than I used to be. And, for the most part, I'm happier that way.

The one person I still consistently judge - and harshly- is myself. And I tend to reflect these feelings onto others and assume that others are judging me harshly as well.

There are times when I don't engage in activities that appeal to me or do things I want to do because I fear I will be judged.

I had a bit of an epiphany about this this yesterday. If I am more gentle with others than I once was, should I not assume that a significant percentage of the people in my life will be gentle with me? And if others do judge me - so what? What consequence does it really have for my life? Why should the opinions of others stop me from living as I wish, as long as my choices are not harmful to others or to myself?

It's time for me to try and let go of self-judgment. It's not going to be easy. And I expect lots of back-sliding. It's going to be hard to separate out setting priorities and acknowledging mistakes from judgment. But I plan to try.

I start a writing class tonight. I'm feeling very anxious about it. Let's hope I can keep some of the words I've just written in my heart and allow myself to participate, learn and have fun.

optimism tested

As we were listening to yet another story on the news this morning about how the Tories and the RCMP have barred people from attending campaign events (for things like having a photo of Ignatieff on their Facebook page or having been involved in an youth environmental organization), my spouse announced "It's going to work."

I was only half way into my first coffee, so I made him repeat himself. "None of this is going to matter," he said. "It's a story for now but it won't affect the election. The Conservatives will get a majority and then, next time, the other parties will have learned that hateful advertising and ignoring the truth are the best strategies to get ahead." (Forgive me, Tim, I'm paraphrasing. That's the gist of what he said)

I fear that he's right. Even the revelations about former aid Bruce Carson have barely affected the campaign.

Perhaps politicians have always said one thing and done another. These days, though, they barely have to pretend otherwise. And some, like Rob Ford in Toronto don't pretend at all. He's thoroughly corrupt, rude and uninformed. And people love it.

And then I learned that Bradley Manning, the 22-year-old U.S. Army Private accused of leaking classified documents to WikiLeaks has been subjected to torture in prison (Avaaz.org has a petition, if you want to add your name), despite the fact that he has never been convicted of any crime (not that conviction would justify torture).

So the message, boys and girls, is as follows. Telling the truth could lead to severe punishment but stealing and lying can only get you ahead.

It's enough to make any thoughtful person feel like ranting. Although I could never do it as well as Keith Olbermann.

Or Rick Mercer.

And please, if, like me, your sickened by corruption and lies and if you believe that a democratic government is a transparent one, please get yourself to the polls on May 2.

fat. not unfit.

I am overweight.

It's worth noting, that, even with years of therapy and a good feminist critical analysis, it still feels shameful to write that.

But it's the truth that as a result of genetics, too many diets started at too young an age (I was put on my first one when I was nine), too many emotional issues related to food and sheer laziness/inattention I am carrying around at least forty extra pounds.

Yet I wouldn't say that I'm unfit.

My cholesterol, blood sugars and blood pressure are all excellent. I have a resting heart rate of 66. And I have heart scans every three months (because Herceptin can damage the heart), so I know that vital organ is pumping along very efficiently.

I average 5.5 hours of cardio exercise every week. I run 3-4 times a week, for more than forty minutes. And, now that the snow is gone, my bike is my favourite way to get around town.

Yet, even people who know me sometimes express surprise when I mention that I've just been for a run. Or that I resumed running consistently a year ago. They are so surprised that many times, when I say "run", people hear "walk" (the fact that many people can walk as fast as I run is a separate issue entirely).

Neither my oncologist nor my GP are concerned about my weight.

And while I may not be fast, my endurance is better than lots of folks who are much thinner than I am.

So next time you see an overweight person at the gym, on the trail or on the bike path, please don't assume that they don't know what they are doing. Don't act shocked when they tell you they exercise regularly. Don't give them gratuitous advice on how to "start an exercise program" or "how to exercise safely." 

Fat does not necessarily mean unfit.

early memories

A few childhood memories remain incredibly vivid. Some have been worn into grooves in my brain, they have been retold so often. With those, I am unsure where my recollections end and those of others begin. Others, I am quite certain, are mine alone.

Here are twenty memories, off the top of my head. Some I have likely shared here before but of some others, I have never spoken, let alone written:

1. Sliding down the driveway at my friend's house, until my pants were worn out. I was wearing a jump suit with giraffes on it and I was in big trouble.

2. Being in love with an airline pilot. He was my aunt's boyfriend and he brought me presents from all over the world. He also called me Miss Muffet.

3. My father telling me that my baby sister had been born.

Those first three memories were from when we lived in Montreal. We moved away just after I turned four. All the rest are from Hawkesbury, Ontario and take place before my 11th birthday.

4. Going to the Dairy Queen with my aunt to get a Buster Bar and dropping it on the way home.

5. Getting caught peeing in my neighbour's rose bushes.

6. Ringing doorbells with my friends and running away.

7. Knocking on my neighbours' doors and asking them for their autographs.

8. Having the belt on my blue coat ripped off by a boy.

9. Being pushed into a bush by some bullies on my way home from school.

10. Trying to ignore a class-mate who was standing at my desk chanting "Tête carrée!" (It means square head and was the standard put down that francophones used against anglos. I had an English last name, and spoke English at home, so I was fair game).

11. The boy I liked in Grade Five telling me that all the boys, including him, had crushes on my best friend.

12. Making up sins in confession because I was too embarassed to tell anything real to the priest. "I talked back to my mother" was a frequent sin.

13. Winning a medal for "best behaved girl" on the same day as my crush won "best behaved boy."

14. My friend Philippe telling me how babies were made - through kissing. I was fascinated and horrified.

15. Being on the winning team during Carnaval at Ecole Marguerite Bourgeois.

16. The way the principal of that school smelled like pipe tobacco and how much I loved him.

17. Being flashed, as I cut through the church yard on my way to school.

18. Seeing a dog that had been hit by a car on the street in front of my house and how it felt like hours until the city came to take it away.

19. Getting a red bike with a yellow banana seat for my 7th birthday.

20. Bringing my new cat across the street to meet my neighbour and telling her "If you don't like my cat, then I can't come to visit you anymore."

Your turn. Can you share some random childhood memories?

random on a rainy day

There's something about a cold, rainy day that makes me just want to crawl back under the covers. I've resisted that temptation all day but I'm fighting a cold and my brain doesn't seem to want to function, except in fits and starts.

Here are some random thoughts, that I'm posting as a compromise between cogent and nothing at all.

1. All four performances of my son's play went very, very well this week end. I could not be prouder of him. He worked very hard for many months, to learn his lines and his blocking and he got himself to every rehearsal on time. The director gushed about him and said that she'd loved to work with him again. He had a big part and he was brilliant.

2. I thought, as his mother, that I was very restrained. I found myself reacting quite viscerally to the kids and teacher who bullied him on stage (Sacha tells me that they are all very nice people) and had to remind myself that they were actors in a play.

3. I was also very restrained during the after-party at a local pub. We sat in a different room from Sacha, gave him money (hey wait - the community centre paid for dinner and drinks and he still kept our twenty bucks!) and we only went to talk to him when it was absolutely necessary. I did call out "There's my baby!" when he walked in the door but otherwise did my best to embarass him only minimally.

4. The pub did not have a wide selection of food, so I decided to pretend I was a student again and share calamari, antijitos and nachos, washed down with beer. Afterwards, my GERD reminded me that I no longer have the constitution of a student. My GERD is well managed but apparently fried things can knock down the best defenses.

5. My jaw is very sore today. I think I'm going to have to break down and wear my mouthguard. Every time I think of it, I remember Tina Fey and Steve Carell in Date Night. It really is that sexy.

6. I've been editing a book in progress for a friend and loving it. It's made me remember how much I love that kind of work - especially when I'm working with good writing and interesting information (which I definitely am).

7. My skirmish with Zellers ended with them sending me a cheque for $7.48 because they "value my business."

8. This blog post was interrupted when Daniel's school called. He was sent home with a tummy ache. He was fine when he got home. This happens every Monday afternoon. Time for a meeting with the school.

9. Daniel just told me to "stop being so moody."

questions for candidates

From the Canadian Breast Cancer Network: Questions to ask your local candidates during the election campaign

 

Question 1: The Financial Impact of Breast Cancer

  

In May 2010, the Canadian Breast Cancer Network released the research report entitled Breast Cancer: Economic Impact & Labour Force Re-Entry, which firmly positioned breast cancer as an economic as well as a healthcare issue.

  

The economic impact of breast cancer is significant, and in many cases devastating for patients and their families. 80% of respondents experienced an economic impact following their diagnosis, often with distressing long-term financial consequences.

  

Some report findings:

• Average decline in household income was $12,000 or 10% of family income
• 44% of respondents used savings, while 27% took on debt
• One fifth of respondents returned to work before they were ready because of financial pressure
• Those who had chemotherapy had a greater loss of household income and were 49% more likely to take longer than 16 weeks off work

Survey respondents reported that the average duration of their breast cancer treatment was 38 weeks, and two-thirds of the respondents took 16 weeks or more off from work. Because Employment Insurance Sickness Benefits last for a maximum of 15 weeks, there was an average gap of 23 weeks during treatment without coverage.

  

If elected, will your government:

  

A. Lengthen Employment Insurance Sickness Benefits for Canadians undergoing treatment for breast and other cancers as well as other illnesses and chronic diseases that require long periods of treatment so that no one who is ill is penalized by the current limit of 15 weeks of sickness benefits?

  

B. Cancel the two-week waiting period for EI Sickness Benefits so that sick Canadians are not penalized?

  

C. Immediately extend the Employment Insurance Compassionate Care Benefit to cover family caregivers providing care to those with breast cancer, other cancers and other long-term conditions?

a. Increase the benefit to 75% of workers' earnings?

b. Increase the benefit period to a maximum of 52 weeks?

c. Allow partial weeks of compassionate care leave over a longer period?

d. Expand the eligibility criteria beyond imminent death within 26 weeks?

  

Question 2: Drug Approval Process in Canada

  

The drug approval process in Canada is lengthy and complex. Currently the performance targets as outlined on the Health Canada website is 300 days for "non-priority" drugs and 180 days for "priority" drugs.

  

Once drugs are approved by Health Canada, cancer drugs pass through the Pan-Canadian Oncology Drug Review (pCODR), formally the Joint Oncology Drug Review (JODR).This process can take up to a year for recommendation to be made. Provinces and territories may then either confirm or disagree with pCODR's recommendations, often resulting in further significant delays and an uneven patchwork of drug coverage across Canada.

  

Cancer patients in Canada face unduly long waits for much-needed drugs, and medications available in one province or territory may not be available in another. But when it comes to cancer treatment, especially for advanced or metastatic cancer, time is of the essence.

  

If elected, how will your government:

  

A. Ensure that the approval processes for new treatments are shortened to permit timely access to new treatments for those who need them

B. Ensure that no cancer patient in Canada goes without internationally recognized gold standard treatments

  

Question 3: Wait Times 

The Canadian Breast Cancer Network's 2008 Breast Cancer Wait Times in Canada Report Card showed that not all Canadian women are receiving equal access to breast cancer treatment. The project was undertaken in order to gather information about what happens across Canada in terms of wait times in four important areas: from abnormal screen to diagnosis, from diagnosis to surgery, time to radiation, time to chemotherapy.

  

We found some outstanding examples of best practices and much evidence that many jurisdictions across the country are working on innovative solutions to the wait time issue. However, the most disconcerting finding was that there are no national benchmarks for wait times and no standards for wait time reporting systems across the continuum of care. The data reported are calculated differently across jurisdictions making it impossible to compare wait times. This has not changed since 2008.

  

In the absence of comprehensive and consistent wait times data, there is no certainty that people diagnosed with breast cancer are receiving optimal care.

  

This is a complex issue. There needs to be national benchmarks for maximum wait times for diagnosis and treatment. Electronic health records must include consistent reporting of wait times across jurisdiction. Best practices must be shared and implemented across the country. Access to timely cancer care cannot depend upon ones postal code.

  

If elected, how will your government:

  

A) Provide the infrastructure necessary to ensure comprehensive and consistent standards for wait time reporting for breast cancer diagnosis and treatment across Canada

B) Ensure that national benchmarks are established for wait times associated with surgery and chemotherapy

C) Ensure the adoption of electronic health records

  

  

Join our survivor advocate campaign and make canada's decision makers aware of the issues that are important to you. Contact khurley@cbcn.ca for more information on how a little bit of your time can make a big impact.