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.

i'll take it.

No nausea.

No bad taste in my mouth.

No rage or sadness.

No aches and pains.

I'm just very, very tired.

I'm not complaining.

third row from the top, second from the right

"gleeBE the Musical is the story of a group of talented, ambitious young people vying to get into the fictitious Arts Sanctuary school in the Glebe. GNAG’s spring theatre production, tells the story of their quest for this all-too-often elusive goal."

(Note: The Glebe is a neighbourhood in Ottawa, Ontario).

what if nothing changes?

Today is a treatment day.

For the first time ever, I will have Herceptin on its own (if you don't count the Demerol and Gravol I get to keep the shakes and fevers at bay).

Some people have almost no side effects with Herceptin. Some feel like they have the flu.

Will the fact that my body has such a strong response to Herceptin mean that I feel more of its side effects?

The break from chemotherapy is meant to help me heal and rebuild - physically and emotionally.

The break from chemo is also a risk.

Here's hoping it all works out for the best.

small changes: two steps forward...

It's high time I reported in on my plan to make small and lasting health-related changes in my life this year. 

It turns out that a small change every week is too much to expect, so I'm going to stop numbering them that way. It makes me feel like less of a slacker.

First change: Weigh in and record my weight every Monday.

My scale is broken and I have yet to have it fixed or replaced.

Second change: Do strength training exercises developed for cancer survivors. Work up to about thirty minutes, three times a week.

I've done these exactly six times in the six weeks since I last updated. It's too easy to talk myself out of doing the exercises. On run days, I tell myself that I'm too tired or don't have time and on non-run days I either don't think about it or don't want to do the exercises in my street clothes. I'm lacking both structure and discipline.

I've been pondering going swimming. I also did something last week that I may live to regret. I bought a twenty class fitness pass from a local gym. It only cost twenty dollars, and I have two years from the first class to use up the pass. It's pretty low risk but I'm worried I'm going to hate it.

At least it addresses the structure question.

Third change: Drink no more than five alcoholic drinks per week.

I seem to be better at breaking old habits than starting new ones. I've had no problem with this goal.

Fourth change: Drink more water.

My original goal was to drink around ninety ounces a day. That was unrealistic and made me feel hungry,jittery and even a little nauseated. Also, I was constantly running to the bathroom. Instead, I am now aiming for the more realistic eight glasses a day. This is no problem for me.

Fifth change: Meditate every day. Start at five minutes and work my way up to twenty.  

I suck at meditating. I just can't seem to still my brain, even if only for a few minutes. I find myself making lists, wondering what to do next, even mentally writing blog posts about how hard it is to meditate.

I suppose I should keep trying, as lots of folks I respect tell me how much they gain from their daily practice. It's a struggle though. I'm comfortable with silence. I don't tend to listen to my ipod when I go for walks or running but I do find sitting still and silencing my thoughts to be hard, hard, hard.

And see above re "structure" or lack thereof.

Sixth change: Always sit down to eat.

It's a very interesting experience to notice how often I pop food into my mouth while standing up. Sometimes, I only think about my plan to change after I'm done. But it's a good habit to break and I'm glad I'm doing it.

And announcing...

Eighth change: Take all my vitamins and supplements.

A while ago, I became so overwhelmed with the amount of vitamins and supplements that had been recommended for me that I just stopped taking any of them. The bottles were taking up way too much room in my kitchen cupboard and I couldn't find a vitamin box big enough to accommodate them all. I everything up in a box and put it in the bathroom in my basement.

Last Thursday, I found a giant pill box and spent half an hour on the week end getting organized. Yesterday, I took most of the vitamins (at different times throughout the day) and had raging heartburn by early afternoon. 

Today, I have yet to take any. 

I have recently re-connected with my nutritionist and we're going to review the supplements I'm taking, at an appointment two weeks from now. I'm also confused about interactions. Some vitamins should be taken with others and some shouldn't. Some taken with food and some not. Is it any wonder I put them all in a box in the basement?

Perhaps I should be setting priorities. What should those be? Calcium? Vitamin D? Fish oil? 

Anyone else out there have the problem of getting heartburn when you take vitamins?

As always, I welcome your thoughts and feedback. What changes have you made for your health in the last while? How's it working out?

giving in to the monkey brain

Herceptin

I think I'm happy with the outcome of the brouhaha over Herceptin in Ontario. For those of you outside the province or outside the loop. Jill Anzarut, a 35 year old woman undergoing treatment for breast cancer made the news last week when she announced that the province had to pay for Herceptin because her Her2+ tumour was less than one centimetre (that's about 1/4 inch) in diameter.

The province initially refused to budge but eventually caved after a massive campaign played out in the social and traditional media. Access to Herceptin will now much more room for discretion when it comes to providing access to the drug.

I feel good about this. It's not that I think that every drug should be funded for every person. Her2+ cancers are very aggressive and, as best put by Stephen Chia, chair of the British Columbia breast-tumour group, “In HER-2 positive cancers, it’s not the size that drives it; it’s the HER-2 gene that drives it.” 

Election

Canadians are once again going to the polls. I am not happy about this. 

I'm sad that the long overdue Bill C-389 protecting the rights of transgendered people will die before it gets the chance to be thrown out by the Senate.

I'm worried that we will end up with a Conservative majority.

I have election fatigue. There was a time in my life when an election would make me feel excited and hopeful. Now I just think, "Ugh."

Presents in the mail

Did you see my scrabble pendant in yesterday's post? My friend Leslie sent it to me after I told her I'd like to have on with my initial on it. It made me very happy to open the envelope that held my surprise.

The bad with the good

Last week, I received my author's copy of the current issue of Canadian Woman Studies. The theme this quarter is Women and Cancer and I have a poem that is part of a piece called "Seven Reflections on Breast Cancer by Seven Women Who Worked Together." I'm happy about that.

I'm far less happy about another piece I stumbled on when I was leafing through the issue. It's called "The Private/Public Split in Breast Cancer Memoirs." It was written by a woman who came to my book launch in Toronto and asked for permission to speak in order to seek contributions - something to which I readily agreed. She also asked me to contribute to the issue, which prompted me to reach out to my writing group.

I had no idea that she planned to write a scathing deconstruction of my book - but that's what she did. I know that all writers get bad reviews but I found her comments to be very critical of me as a person (I guess you can't seperate the analysis of a memoir from its author) and quite unfair. 

I'm sure how to respond or react, or whether I should do so at all. I've actually been unable to finish reading the article. With a distinct lack of maturity, I threw the journal onto the living room floor and it stayed there for several days. I only just picked it up, in order to write this post.

I'll let you know what I decide to do. Meanwhile, I'm pasting my very own contribution below. It's a very small part of a greater whole (and not the strongest piece by the seven of us by any stretch) but it's mine and, like all my writing, expresses a little bit of what has been in my heart.

Snap shots

December 2^nd, 2005.

When I close my eyes, I see myself as I was then.

Short dark hair and boots with heels.

Irritable and excited in equal measure.

I knew big change was coming. And it did. But it was not what I expected.

I was getting undressed when I found the lump.

July 1^st, 2006

I close my eyes and see myself as I was then.

Round, bald and bloated. But happy.

Chemo is behind me. Or so I expect.

I am self-conscious but also hungry.

I eat two burgers at the barbecue.

December 24^th, 2006

I close my eyes and see myself as I was.

I rallied for Christmas Eve but in the end the pain got the best of me.

My liver was riddled with tumours. And I had waited too long for the morphine.

My mother had to put me to bed. That comforted me.

And so did the drugs.

June 25^th, 2007

I close my eyes and I can taste

The strawberries on my tongue

The sensual pleasure of the whipped cream

And the Niagara ice wine as it slid down my throat.

I knew I would soon have something to celebrate.

December 16^th, 2009

I close my eyes so I can think.

I have now been in remission for 30 months.

And I will be in treatment for the rest of my life.

Some days I wake up celebrating.

Some days I grieve for what I have lost.

Today is a sad day.

Tomorrow will be better. Or maybe the day after that.

how i fill my days (for better or worse)

where i've been

Update: I've decided that my habit of using initials instead of names makes some sentences confusing and nearly unreadable. Henceforth, I will use my discretion - and mostly use names.

Hey there.

March has been a busy month for our little household. And last week was March Break. We all drove to Toronto and then our oldest, Sacha, went to visit two of his parental grandparents in Florida. It was his first flight (other than a short hop between Toronto and Ottawa) on his own (and he's now too old to be an "unaccompanied minor"). 

But I'm getting ahead of myself.

It seems that I'm not so great at multi-tasking these days. I have lots of blog posts in my head but before I write them, I thought I'd catch you up on what we've been up to since my last post.

On Saturday, March 12, I ran a bunch of errands and packed for our week away. We also went shopping for new clothes that my 7 year old could wear for a theatre date with his Grandma in Toronto.

He was very pleased with this outfit. The photo doesn't do him justice.

On Sunday, March 13, we drove to Toronto. That evening, Tim and I went out for a delicious Indian meal to celebrate our 20th anniversary (we celebrate the anniversary of our first date because our wedding anniversary is September 7. At that time of year, our lives are so busy. Besides, March needs a reason to celebrate). It's hard to believe it's been that long - and we still like each other.

I started my day on Monday, March 14 by lining up outside the Toronto office of Passport Canada, since we had realized the previous Friday (at 4:30) that our son's passport had expired (I can now safely confess this, as he has been and returned to Florida and you all can know that our parental ineptitude didn't lead to tragedy). I was second in line (well before dawn) behind a woman and her two young children from Northern Ontario who had been turned away from their flight to South Carolina the previous day (the woman's MP had assured her that her son could travel to the US on an expired passport. He could not). Her name was also Laurie and her boys were also five years apart. We bonded, as we stood on the pavement outside the passport building for 90 minutes.

Once the new passport was sorted, Tim and I took our youngest to the zoo (Sacha opted to go check out the  TIFF building with his Grandma). I didn't take any pictures but we had a great time. It's a sprawling place with animals that appear to be reasonably content. At least I hope so. Daniel was ecstatic. His favourite animals were the gorillas and the bats (no photos. I was too distracted and perhaps still groggy).

On Tuesday, March 15th, Tim drove Sacha to the airport in Toronto (I was happy not to go, since I was beside myself with anxiety) and then headed back to Ottawa to work (he was extremely patient with me as I texted him every forty-five minutes for updates).

I was happily distracted by the wonderful company of my friend Andrea We went out for brunch and then spent a few hours at the Purple Purl, one of my favourite places in the world. Andrea's spouse Patchen joined us for dinner and we three had a lovely meal. I was back at my Mom-in-Law's place before my seven year old who had spent the day with Grandma and gone to both a Second City kids' show and Billy Elliott.

On Wednesday, March 16, Daniel and I took the train to Guelph, where we hooked up with some cousins and went to the Butterfly Conservatory. Despite the heat in the building (I looked with envy at the folks who'd worn shorts), we had a great time. Besides the amazing butterflies (a gorgeous blue one landed on Daniel, to his great delight) there were many kinds of birds, fish and turtles.

Daniel and his young cousin Y. had some strong mutual admiration going on.

On Thursday, March 17, was primo cousin hanging out time. Daniel loved being the oldest cousin. Five year old N. (whose two older sisters were in Florida with Sacha) seemed equally pleased to have some boy time. 

I took the boys to see Mars Needs Moms in 3D (great animation, problematic movie) and then we went to a really great park. That evening, the boys entertained each other happily over dinner out (at Swiss Chalet - the pubs were packed with partiers dressed in green) and my brother-in-law and I had the chance to converse in complete sentences (my poor sister-in-law was at home recovering from a very bad case of food poisoning. She was more of a trooper that day than I would have been in her shoes).

On Friday, March 18, we returned to Toronto and I got to spend the afternoon and evening with my dear friend Leslie. We had lunch, browsed the Distillery District, went for a big walk along the Boardwalk and then had dinner at our favourite pub over pints. Meanwhile, Grandma took Daniel up the CN Tower and for a swim at the Y.

We took the train home on Saturday, March 19. We watched far too many episodes of The Magic School Bus  but not once did Daniel say, "How much longer?" or "Are we there yet?"

It was a very good week.

The last couple of days have been focused on re-entry - catching up with friends, going to appointments and making endless lists of things to do. As of this evening, Sacha is safely home. Tomorrow we can return to routine (bring on the fights about homework and cleaning up bedrooms). Whatever form it takes, a break from routine can be a very good thing.