not just about cancer

3 truths

2012-01-30T12:20:00.000-05:00

No one can understand hot flashes unless they have experienced one.

It is so much easier to appreciate the beauty of one's own community when viewed through a visitor's eyes.

This is the definition of good friends: You don't think twice about letting your kid go to their place for dinner wearing pajamas. And when you get there you discover that their kid is still in pajamas too!

photo: M. Slavitch

and the winner is...

2012-01-27T13:02:00.000-05:00

Nancy from Nancy's Point! I'll be sending her a copy of Not Done Yet early next week.

Thanks so much to everyone who entered.

I'm hoping to have an ebook version of my book out soon. This will make it so much easier to send out (and no more shipping costs!)

not done yet: a giveaway

2012-01-23T14:12:00.001-05:00

I'm feeling completely uninspired on the blogging front, so I've decided to run my first ever contest.

Would you like to win a copy of my book, Not Done Yet: Living Through Breast Cancer? To enter, just tell me why you'd like to have the book (it can be serious or funny) in the comments section and I'll pick a winner at random, on Friday, January 27th. Contest closes Thursday, January 26th at midnight.

There are only a few unsold copies left, so get one while you can.

In other news, I'm reliably informed that my publisher is planning on re-releasing Not Done Yet as an ebook. No more shipping costs!

you must watch this

2012-01-17T12:17:00.003-05:00

I wish I could give a copy of Pink Ribbons Inc to anyone who has ever asked me why I'm down on the pink ribbon industry. The documentary summarizes all that is wrong with pinkwashing, in the most powerful terms possible: through interviews, images, facts and with women telling their own stories.

My 13 year old son and my mother in law saw Pink Ribbons Inc when it opened at the Toronto International Film Festival in September. They were both blown away. My son is a film buff and he declared this one to be one of the best documentaries he'd every seen. Last week, I was invited to an advance screening of the film and - although I was already sympatico with the message - I was riveted, moved and angered. It's incredibly well done.

The movie is based on the book by Dr. Samantha King (the author is featured in the movie) and could be separated into three threads (each of which could make it's own documentary):

The truth about cause marketing and the pink ribbons industry.

The lack of discussion and resources going into determining the environmental causes of breast cancer (or any cancer).

How traumatic and alienating the pink ribbon industry and talk of "survivorship" is to women who live with metastasis.

It's all extremely powerful and persuasive.

My one quibble with the film is the depiction of those who participate in runs/walks for the cure as naive dupes. While there is no doubt that many of us have been led to believe that we are effecting real change when we fundraise and walk, our reasons for doing so may be more complex than the movie allows.

Taking part in these walks can be fun - a celebration of life and community. Even with all my objections and analysis, I have felt myself swept up in the fun and emotion of the Run for the Cure - all the while wearing my No Pink for Profit t-shirt. And what's more not all the money raised at every walk goes to undefined research. I know that the Week end to end Women's Cancers in Montreal (a walk featured in the documentary) built a survivorship centre from funds raised that's of concrete use to all women with breast cancer.

But the quibble is a minor one and the movie is terrific. You should see it. In Ottawa, the movie will be at the Mayfair Orleans from February 3 to 9 and the ByTowne from February 17 to 23. Check your local listings often and go! Documentaries don't stay in the theatres for very long.

Pink Ribbons Inc.

2012-01-16T12:29:00.000-05:00

3 tips

2012-01-12T17:41:00.000-05:00

I've been asked by BreastCancerAnswers.com to come up with three tips I'd like to share about going through breast cancer treatment. This poses an interesting challenge. I had to ask myself, "Out of all the good advice I've received and doled out, what three things have stayed with me? Living, as I have, in cancer treatment for 6 years, what is most important."

This is what I came up with:

1. Don't be too hard on yourself and don't compare yourself to anyone else (why yes, this is one tip - the two statements go together, OK?). Just as every cancer is different, treatments vary widely and so do our responses. Just because that you've been told that Jane worked full time and ran 5k every day of treatment doesn't mean that you ought to be doing these things. And conversely, you don't have to become a shut in just because Jane chose to stay in bed for weeks at a time. Who knows? Jane's choices may have been made because of what other people told her she should be doing. Do what's right for you.

2. When in doubt, bring a friend. People like to be asked to do specific things to help friends and family going through treatment. Don't be afraid to ask for company. Some of the meds I take leave me so wobbly I couldn't make it home without assistance. But even if I feel fine, I've been very happy to have a friend with me to provide a distraction during treatment or be a second pair of ears during appointments.

3. Live in the moment. We all want and hope to put treatment behind us. It really helps me, though, to take a look around and see the things that are good in my life right now. This doesn't come easily to me. I'm someone who lived much of my life looking ahead. I'm working on identifying those things in my life that give me great joy - and then savouring them.

I think that's it. If you've been through cancer treatment, what three tips would you share?

makes me happy

2012-01-09T12:33:00.000-05:00

As a way to ease myself out of my winter ennui, my therapist suggested I do some journalling about the things that make me happy. Some of those things are probably evident to anyone who knows me even a little:

Hanging out with my kids.

Laughing with my sweetie.

Watching my dog run in the snow.

Riding my bike.

Reading a good book.

Being in a yarn store with money to burn.

But when I dug a little deeper, I came up with some things that are a little less obvious:

The moments of real connection that can pass between friends and strangers.

Having a good idea.

Eating a healthy, tasty meal I've made myself.

Clicking the "Publish" button on a good blog post.

Getting positive feedback about my writing, especially from other writers.

Looking forward to a trip, whether near or far.

Texting with my BFF.

And, perhaps not surprisingly, it turns out that writing about what makes me happy...makes me happy.

if you can't beat it, sit in it

2012-01-06T16:01:00.000-05:00

if it's not on a list, then it doesn't exist

2012-01-05T13:10:00.001-05:00

If I have any latent OCD going it, the condition manifests itself in the form of making lists. My name is Laurie and I am a compulsive list maker.

I have to-do lists (of course).

I keep the lists of the books I read (58 in 2011), how many come from the library (40 last year) and how many were by the same author (Michael Connolly was the big winner in 2011. I read 8 of his books).

I also track how much exercise I get (only 130 minutes so far this week. I got off to a slow start) and how many minutes I spend cleaning the house (it's a lot more than you'd think, if you ever saw my place).

I track how many minutes I spend writing and how much time I spend online. I track my weigh and - since January 1st- the number of calories I'm consuming.

It's an addiction. Writing lists and keeping track of things soothes me the in the same way that a piece of fudge can take the edge of a bad day. As with the fudge, I'm not entirely convinced that it's helpful. But I have no intention of stopping.

In the years since I stopped working at a paid job, I think the lists provide the illusion of the structure that I miss terribly. Sometimes, when my life is feeling out of control, just making a few lists can make me feel calmer.

As long as the lists don't get too long, or there aren't too many of them, I don't think there a bad thing. The trick is not to let my self-created lists oppress me into paralysis. Or become so time consuming that keeping on top of my lists takes up my whole day.

Maybe I should make a list of all my lists, just to make sure there aren't too many.

Or maybe not.

2012: ditching the Guilt

2012-01-04T15:32:00.001-05:00

What Catholic girl (former or otherwise) doesn't learn to feel guilty at a very young age? I was always a bit of an overachiever. I'm good at Guilt.

I feel guilty that I have No Evidence of Disease when other wonderful women have died.

I feel guilty that I'm not working.

I feel guilty that I have insurance.

I feel guilty for being alive.

And, with every clean scan, every month that I continue in treatment that does not include chemotherapy, the guilt just gets worse.

It's not very constructive.

I need to figure out how to free myself from the Guilt. It distorts my perception of myself and others like a greasy hand-print on the lenses of my glasses. I have to figure out who I am and what I want, without having to squint or interpret what's on the other side of the smudges.

It won't be easy. And it may take me more than a year. But that's what I'm working on in 2012.

in other news

2011-12-14T12:02:00.001-05:00

My children are still very beautiful.

(photos: Mary Anne Folckomer Register)

not imaginary

2011-12-12T18:31:00.002-05:00

It's a running joke in my house, "Mama's talking to her imaginary friends." They're the people I've met online over the last few years, through blogging and various social networks. Of course they are very real people and when bad things happen to them, I do feel it keenly.

S., though, was someone I met in person - at the Conference for Younger Women Affected by Breast Cancer in early 2009 - and with whom I continued to connect online. We first connected because we both had metastatic breast cancer but soon realized that we had much more than the cancer in common - a progressive outlook, quirky gifted children and we both chose to expressive ourselves in creative ways. Unlike me, though, S. was a bona fide artist who used fabric as her medium.

S. was about my age. She had been diagnosed at Stage 0 but the cancer seemed to have quickly metastasized (was it just very aggressive or had something been missed? This was one of the things we discussed over dinner on the evening we met). We ended up spending all of our free time together, during that long week end in Atlanta - every coffee break, meal and evening. We even grabbed lunch together before grabbing our shuttle to the airport.

We stayed in touch after we got home, exchanging the occasional email and through the Care Pages that S. set up to share news with family and friends. She wrote to me about her latest art project (which integrated images of cancer cells), her daily life and a wonderful trip that her family took to Costa Rica. She also shared her frustration with the fact that no treatments seemed to slow the progression of her cancer.

Last week, I received a notice that S.'s Care Page had been updated. I logged in and found a message from her husband: saying S. had had moved from treatment to hospice care. Yesterday, he contacted us to say that this remarkable woman had passed away in her sleep.

I've run out of words to describe my sadness and the grief I feel on behalf of her family. Another child has lost her mother. It's all so wrong.

Over the week end, Zoom remarked that having cancer brings a lot of people into your life but takes a lot of them out, too. And, the truth is, I would do nothing differently, even knowing I would face loss and be forced to confront the possibility of my own death. The people who have come into my life - online and off- since my cancer diagnosis have improved my life immeasurably. I wouldn't trade that for anything.

But, right now, my heart is aching.

Judy

2011-12-10T12:21:00.001-05:00

I'm sure she did not "go gently into that good night."

Judy was a fighter, a woman whose Facebook page stated "I love my life." And that was life centered around her family and friends, especially her 10 year old son and her husband.

I first met Judy (and I do feel like I knew her, even though we never met in person) when 20 or so women were brought together by Susan to form the group blog, Mothers With Cancer. It was clear from the outset that Judy would become a particular friend.

She had a passionate sense of social justice, a dark sense of humour and a straightforward manner that endeared her to me immediately. Like me, she loathed the pinkwashing that takes place every October. We even both had dogs who were considered part of the family.

Judy never stopped being angry about cancer. She railed against the unfairness of a world that afflicts so many of us with this evil disease.

At the same time, she never stopped appreciating the beauty in the world around her - in her environment, at work and in her family and friends. She never stopped finding things about which to laugh.

It's because of Judy that I applied for Little Pink Houses. I know that her family's week with the organization was a glorious experience (and so was mine). We often said how great it would be to meet up in person. Jeanine from Pink Houses did meet both of us and told me she is confident that we would have liked each other as much in person as we did online.

Judy, my friend, I miss you already. My heart goes out to everyone who loves you, especially Nate and Frank. Many, many, many people mourn your loss and celebrate your life.

a message in my library book

2011-12-08T11:21:00.001-05:00

Deanna: a tribute

2011-12-07T11:03:00.001-05:00

Brilliant.

Funny.

Committed.

Accomplished.

Artistic.

Strong.

Insightful.

Perceptive.

Inclusive.

Accepting.

Activist.

Loving mother, daughter, sister, friend.

I struggle for the words to write you the tribute you deserve. You are loved, admired and missed by so many.

My heart goes out to your family. I will hold you in my heart forever and continue to be inspired by you every day.

http://deeupdates.blogspot.com/

i remember

2011-12-06T11:30:00.000-05:00

Geneviève Bergeron

Hélène Colgan

Nathalie Croteau

Barbara Daigneault

Anne-Marie Edward

Maud Haviernick

Maryse Laganière

Maryse Leclair

Anne-Marie Lemay

Sonia Pelletier

Michèle Richard

Annie St-Arneault

Annie Turcotte

Barbara Klucznik-Widajewicz

re-charging

2011-12-05T12:24:00.001-05:00

love

2011-12-01T08:50:00.001-05:00

photo: Mary Anne Register Folckomer

open letter to vendors who participate in group-buy programs

2011-11-24T12:59:00.001-05:00

Dear Vendors,

I love group-buy deals (those you offer through Living Social, Dealfind, Groupon, Koopon, etc.) but I don't love them as much as I did a few months ago. I've had a few experiences that have turned me off group-buying and made me dislike some of the vendors who have chosen to participate.

Here's my unsolicited advice for any vendors contemplating participating in a group buy opportunity:

Don't act resentful, frustrated or even surprised when I call to cash in on my voucher. You may be regretting your decision to participate or overwhelmed with the response but that's not my fault. And if the point of selling these things is to introduce me to your business, then making me feel like my call is unwelcome is not the way to start our relationship.

Don't complain about the low price you set for your voucher. It makes me feel like you're accusing me of pulling a fast one or trying to rip you off.

Don't sell more vouchers than you can accommodate in a timely fashion. I bought a voucher for house cleaning in early October - but the earliest they can come is January 17, 2012. I'm pissed off and our relationship has yet to begin!

Don't add on additional fees that are not mentioned in the voucher. It's not cool to make me pay a "sign up fee" or tell me that the group-buy people "forgot to account for taxes."

Don't treat voucher clients like second class citizens. Unless you've stated this clearly on the voucher, I shouldn't have to wait outside your class/restaurant/spa to make sure that all those who've paid the full freight have been served first and then get whatever is left over.

The goal of participating in the group-buy process should be to attract new customers - ones who will keep coming back. If the voucher experience isn't a positive one for everyone who buys in, then the vendor has indeed wasted time and money.

I know that the group-buy companies engage in some pretty hard sell strategies (I once sat in a cafe and listened to the owner say 'no' several times, in several ways to a group-buy salesperson) but if you've leapt, you might as well make the best of it.

I've had three group-buy experiences so far that have been delightful. Two were with restaurants (Foolish Chicken and Kinki) and one was with a local yarn store (Wabi Sabi). I was already a fan of the chicken place but this just reinforced my loyalty (and I bring lots of others with me). I'd not been to Kinki for years but the experience was so lovely that I'll go again (and again). And the owner of Wabi Sabi was so incredibly helpful and gracious that they've won me over (and I've been telling everyone else to go, too). Those vendors could give lessons to some of the rest of you.

So, vendors, think before you sign up with the group-buy people. And if you decide to participate, be gracious, organized, responsive, welcoming and fair. Don't make me regret having bought what you're selling.

Very sincerely,

a potential customer

Canada Reads 2012

2011-11-24T11:55:00.001-05:00

The top five Canada Reads 2012 books were revealed yesterday, as well as the five Canadians who will advocate on their behalf.

Despite my frustrations with how things went down last year and my initial resistance to an all non-fiction Canada Reads, I'm excited.

The books look interesting and their defenders seem passionate. And almost as diverse as Canadians can be.

I really enjoyed reading last year's book choices. It was the actual debates that set my teeth on edge. If I had been one of the authors of last year's books, I would have been very disappointed in the quality of discussion (except for Sara Quin defending Essex County - she was wonderful). The conversations were generally at the level of a school yard taunts ("Oh yeah! Well I'm going to vote against your book because you didn't like mine!" "I didn't even finish reading your book but I'm going to tear it down anyway!"). There was so little discussion about the actual content of any of the books. How is it that the Canada Reads debates made me less interested in novels I had already read and enjoyed?

But that was last year.

The best part of Canada Reads in any year is reading the books. It's also the biggest commitment. And I've decided to do it.

Will you join me?

The books chosen for 2012 are:

The Game by Ken Dryden (defended by Allan Thicke)

On a Cold Road by Dave Bidini (defended by Stacey McKenzie)

Prisoner of Tehran by Marina Nemat (defended by Arlene Dickenson)

Something Fierce by Carmen Aguirre (defended by Shad)

The Tiger by John Vaillant (defended by Anne-France Goldwater)

i don't understand

2011-11-23T14:16:00.001-05:00

The Canadian Task Force on Preventative Health Care has released new guidelines for breast cancer screening. Among other things they have recommended that women under the age of 50 with an "average risk of breast cancer" not be referred for regular mammograms. Women over 50 would only get mammograms every 2-3 years (as opposed to every year). They also advise against regular breast exams and self-examination.

I don't understand.

On their web site, the Task Force gives no reasons for these guideline changes but I have heard several interviews on the radio and the main arguments seem to be that mammograms generate too many false positives, submitting many women to uneccessary biopsies and other intervention.

There must be more to this. I have to be missing something. I have witnessed the trauma and fear that false postives inflict on the women and their families who live through it. However, I don't think it's as bad as the trauma of being diagnosed at Stage 4 because breast cancer was not caught at an earlier stage. And breast cancer in younger women, is often more aggressive.

Is there a part of this story that I'm missing? Task Force spokespeople insist that the new guidelines were not influenced by the desire to conserve resources. Really? Colour me skeptical.

The Canadian Breast Cancer Foundation released a statement yesterday in support of regular mammography and critical of the new Task Force guidelines:

“The fact is scientific evidence demonstrates that earlier detection and diagnosis can save lives among women 40-49 by at least 25%,” said Sandra Palmaro, CEO, Canadian Breast Cancer Foundation – Ontario Region.

Palmaro added that screening can help find cancers that are smaller and haven’t spread, which can allow for better treatment options and reduced disability and death from breast cancer. Breast cancer continues to be the most frequently diagnosed cancer among Canadian women.

One of CBCF’s most significant concerns about the Task Force report is that it relied heavily on old data from “randomized controlled trials” (RCT’s) related to breast cancer screening and mammography, some of which are 25 – 40 years old and were based on equipment that is now outdated. There has been an enormous change in breast imaging since that time, including significant improvements to analog technology, and the continued adoption of digital mammography across Canada. Digital mammography has been shown to increase accuracy in younger women pre and perimenopausal women, and women with dense breasts, the group the Task Force recommends be excluded.

This sounds pretty convincing to me. Your thoughts?

2011-11-18T16:08:00.001-05:00

Photo: Mary Anne Register Folckomer

metaphor

2011-11-17T16:47:00.001-05:00

it is what it is (and what it is is ok)

2011-11-16T13:34:00.001-05:00

Herceptin makes me feel lousy. Or maybe it's the Demerol they give me from flopping around like a fish with a fever. Either way, after every treatment I feel achy and hungover for a couple of days.

It's a not nearly as bad as when I also have chemo (and I bounce back more quickly) but I'm still really dragging my butt around, when I bother to get up at all. I'll go for a walk later but it will take every ounce of the meager willpower I possess to get myself dressed and out the door.

I saw the cardio-oncologist again on Monday and that appointment went as well as could possibly be imagined. My heart was slightly damaged by the Adriamycin but has remained just below normal, since being on the Herceptin. The verdict: I can continue with Herceptin. I don't need to have heart scans every three months, as I have been. I don't even need to be followed by a cardio-oncologist unless my ejection fraction dips below 45 (it's currently around 49) or I experience symptoms of heart failure (um, yeah).

It appears that this whole heart scare was a tempest in a teapot - a reminder that when it comes to treatment of women living with metastasis, doctors are just making stuff up as they go along. They really don't know the long term effects of the drugs that keep us alive because our being alive and in remission is still so unusual. It's a bit unnerving but, given the alternative, I'm happy to serve as a human guinea pig.

Cross-posted to Mothers With Cancer.

what i did on my november vacation

2011-11-14T18:53:00.001-05:00

We just got back last night from our post Little Pink Houses of Hope road trip and I'm just too tired to put together very many coherent sentences. I'll write more later this week but I wanted to tell you all that my family had unbelievably fabulous time in Myrtle Beach.

Here are just some of the things I did:

Had my first Krispy Kreme donut.

Discovered real fried chicken and North and South Carolina barbecue and banana pudding.

Gained four pounds.

Spent time in the sun on the beach, walking, playing and just sitting around.

Enjoyed the glorious weather.

Learned how to hula dance and watched a man swallow fire.

Read 575 pages of a book and still have 1000 to go.

Went fishing without touching a pole and had a glorious time.

Blew off NaBloPoMo. I was having to good a time to waste it hunting down wifi.

Went to a concert with celebrity look-alikes who weren't dressed in drag.

Had my first manicure.

Dressed up to have my photo taken.

Played mini-golf.

Learned that southern hospitality is a wonderful thing.

Met many wonderful people.

Enjoyed my beautiful family.

Went for walks by myself.

Relaxed, unwound and chilled out.

Felt supported, cared for, spoiled and restored.

"Lived stronger. Loved harder. Laughed deeper."

I am so grateful to Jeanine, Melissa and all the wonderful volunteers, donors and families who make Little Pink Houses of Hope such a wonderful experience.

taking stock

2011-11-08T09:00:00.001-05:00

(from Myrtle Beach, South Carolina)

16 hours of driving

31 hours on the road

countless new people

4 bedrooms, 3 baths

2 happy kids

1 bad sunburn

immeasurable kindness.

roadtrip connection

2011-11-07T17:35:00.000-05:00

She made him in about 25 seconds.

I was getting breakfast at a hotel in Woodbrige, Virginia with Daniel at my side when an older woman came up to me and said, “You've got a busy guy there.”

I glanced over at my son, who was making pyramids out of the mini-cereal boxes and smiled. “I definitely do.”

“My grandson was just like that,” the other woman assured me. “And now he's on the national speedskating team. He kicked butt at his last competion.”

“That's great!” I said and meant it. I love these kinds of stories.

“So you, see,” the woman added. “It all works out in the end. His name is John-Henry,” she said proudly.

I promised to look him up, and I did. She wasn't kidding. He is kicking speedskating butt and things really have worked out that formerly “busy boy.”

off the top of my head and maybe out of my mind

2011-11-06T09:00:00.000-05:00

Last spring, I shared a bit of tabloid inspired writing about a mother who is revolted by her own child that I'd done as homework for a class I was taking. A few days after I wrote that piece, we did an in class excercise, starting with the prompt, "It was a strange creature and it was looking right at me." How could I not be reminded of my bat boy? I wrote this by hand and in ten minutes but I think it's kind of fun.

I love the inspiration and motivation that comes from being part of a writing group. I miss it.

It was a strange creature and it was looking right at me. Someone had called to say they'd seen a strange looking man hanging out by Berit's Cave. No one thought much of it, until some smart young deputy mentioned the report that had crossed my desk the day before. The missing boy from up North. He'd stolen a car and not been heard from since. The thing was that the car was expensive but that was not what had folks all riled up. What really mattered was what had been inside the trunk of the car – a brief case full of cash. The had likely not known the bonus he was acquiring when he stole that car but he had stolen it and the folks in Maryland were very keen to get it back. And they'd said the boy was odd-looking, too.

Odd-looking. Funny-looking. Those expressions did not do justice to the creature that stood before me. At first glance, I thought I was seeing a monster. When rational thought returned, I saw that I was looking at a young man – a boy really – whose features looked disconcertingly like those of a bat. He had pointy ears, tiny eyes, a pushed in nose and his teeth – I saw them when he opened his mouth to yell at me – were small and sharp, as though the owner had filed them to a point. Not to put too fine a point on it, the kid was hideous.

I started to ask who he was and about the stolen car when he charged at me, head lowered like a battering ram. He wasn't very big but the attack and the accompanying ear splitting scream caught me by surprise. Before I could react, I had fallen ass over tea kettle and the boy was on the run. It took a second to regain my composure – was it only a second? Before I called for back up. I told 'em to send for the young deputy – I hoped his feet would be as fast as his mouth.

I didn't want to chase the boy. It wasn't really my bad leg – the excuse I gave to my sheriff. The fact was, the boy had really freaked me out. It wasn't just that he was ugly – although he was that – but it was the eyes that had scared me the most. There was no soul there. When I looked at him, all I saw was emptiness reflected back at me.

I wish I'd thought of sharing this on Hallowe'en. I wonder if there's more writing my bat boy can inspire.

outside the zone

2011-11-05T07:00:00.001-04:00

In the nearly six years since my initial breast cancer diagnosis, I have become increasingly introverted. As a child, I was pretty outgoing. However, later in my teens and throughout adulthood I have developed a form of social anxiety that makes it easier to address a crowd of hundreds than to speak to a handful of new people at a social gathering.

I come by it honestly - anxiety disorders run in my family - but the structure of my day to day life hasn't helped. When I was going to an office every day, I had to interact with co-workers and new people every day - and (mostly) I enjoyed it.

I've always liked spending time on my own but these years of introspection have made it seem like more of a hurdle to confront social anxiety. I have a busy social life but I choose to spend time mostly with trusted friends, going places that are familiar to me.

I don't think there's too much wrong with that but I have seen how fears can make one's world smaller and deprive us of experiences that we might enjoy or, at the very least, that can teach or inspire us. I talk to my kids a lot about how everyone needs to strike a balance between doing things we know that we love and undertaking new challenges - about how confronting our fears is often the only way to make sure that our fears do not come to control our lives.

This year, I've been very inspired by my friend Andrea, who has taken it upon herself to do many things that take her outside her personal comfort zone. While she's danced and travelled and taken on public speaking, I've attended a conference, taken a job as an Elections Ontario officer for a day and now - my family is heading on an entirely new adventure.

This morning, we are pointing the car towards Myrtle Beach, South Carolina, on our way to take part in a week-long family vacation hosted by Little Pink Houses of Hope. We will be joined by 13 other families and every mother in the group will have been treated for breast cancer. The only mandatory group activities will be dinner on the first night and the last. In between, we will be in our own beach house and all group meals and activities (in the past, these have ranged from jewelry making to hang-gliding) during the week are optional. I'm very grateful for the opportunity and the generosity of the organizers but I'm also freaked right out.

It's going to be an experience. And, as Susan (aka the Bubbster) pointed out to me in an email, "The trip sounds wonderful and you'll all 'dine out' on the vacation for years to come. They'll be happy and funny stories, I know."

In other words, great blog fodder. And most definitely, an interesting experience.

Movember Man

2011-11-04T08:15:00.008-04:00

Does it seem to you like there are a lot of men in your neighbourhood sporting really bad facial hair? You're not imagining things. It's Movember!

All this hairyness is happening for a really good cause - to bring an end to prostate cancer. This is a fundraiser/awareness campaign that I like very much. It amuses me, no one needs to buy some carcinogenic/useless/environmentally unfriendly product to participate and we are all reminded of the cause every time we look at a man and wonder "Is he or isn't he?"

If you know a man who's participating in Movember, please support him. If you don't, please support my friend Ken. He and I go way back (more than 20 years - gulp). He is a Good Man - funny, kind and with a generous heart. He really deserves your support. Besides, he's being very brave. The last time he sported a moustache was a very long time ago and it was a little - well - scraggly. Many men's beards improve greatly over the decades (Tim's certainly has) but, as Ken sets out on this adventure, he just doesn't know how it's going to go.

I've already donated. It was a selfish act really. I want him to post photos.

All funds raised in Canada during Movember go to Prostate Cancer Canada, awareness and education programs and towards a Global Action Plan to eradicate prostate cancer worldwide. I can get behind that. Will you?

chemo brain or just getting older?

2011-11-03T11:04:00.001-04:00

A few days ago, a massive filling popped out when I was brushing my teeth.

I made an appointment with my dentist to go in today. It hurts, so I've been very much looking forward to this appointment, mentioning it a lot and looking forward to being able to chew again.

I was shocked this morning when my dentist's office called, and his assistant said, "You're supposed to be here. Do you remember your filling?"

I hadn't forgotten my appointment or the filling (did I mention it hurts?) but I had been convinced it was at 2pm this afternoon, not 9:20 this morning.

As it turns out, they did have an opening at 2pm, so I will get my tooth fixed this afternoon, after all. As she was hanging up, the assitant said, "It was just a misunderstanding." I responded with "No, I'm an idiot."

Please tell me that this kind of thing happens to you, even if you've never had chemo.

back at it

2011-11-02T09:54:00.000-04:00

I've decided to participate in National Blog Posting Month (or NaBloPoMo) this year, after a two year hiatus (in 2009 I did NaNoWriMo instead and last year, I just didn't feel like it). Let's hope it brings inspiration and a renewed commitment to regular writing.

I'll be accepting suggestions for blogging topics. If previous years are any indication, expect this month's content to be pretty eclectic.

wishing for a dreamless sleep

2011-11-01T22:29:00.000-04:00

I'm about to hit the hay. I've been plagued by wild dreams of late and I'm hoping tonight's sleep will be deep and dreamless.

No discovering that I've not graduated from high school.

No returning to live with my parents while I complete school.

No wandering the halls unsure where I'm supposed to go and unable to find the office or a time-table.

No discovering I'm way, way hopelessly behind.

No finding myself responsible for other people's babies.

No getting my stomach pumped.

No crawling into bed, only to discover that I've let myself into a stranger's home and I'm under the covers of their guest bed in their living room.

No mowing the same stranger's giant lawn under a blinding hot sun.

No dead dogs on the lawn.

No horrible hair cuts.

Just sweet, dreamless sleep.

Wish me luck.

questions off the grid

2011-10-31T15:16:00.001-04:00

Last week, I spent several days in a cabin on a very quiet island in Northern Ontario. It was bliss.

We were also completely offline. No phone, no electricity, no internet. I didn't mind one bit but it did serve to underline how often I have come to rely on Mr. Google to provide information. Here are just a few of the questions that went unanswered:

What is the difference between NASCAR and Formula 1?

What is the weather forecast?

What is fracking?

How do I knit cables without making holes in my knitting?

Who bought the Body Shop?

Why does the carbon-monoxide detector keep going off?

What are the health benefits of okra?

What are the ingredients in sweet potato pie?

What dogs are in the high risk group for bloat?

Are coffee grounds good for the septic system?

Is there a specific person assigned to travel with the Stanley Cup? (The internet has failed me on this one! One link said there are three Hall of Fame staff who travel with the Cup but when I clicked through to the the article itself, the info was not included).

going away

2011-10-21T09:00:00.001-04:00

Later this morning, my dog and I are going off on an adventure.

We're taking the train to Toronto and then piling into a van with two big Labradors and one of the people I love the most in the world. We'll drive several hours in a northerly direction and then we'll take a boat to a quiet island.

For several days, we will eat, talk, walk, read, I will knit and we will talk some more (or at least the humans will. The dogs will join in the walking part and will do their own share of eating). We will be completely off the grid.

On Thursday, we will pack up our gear into the boat and reverse the process to travel home.

This is the second time we have done this (although the first time for Lucy, my Tibetan Terrier). Last year, I had been teetering on the edge of a depression and came home feeling restored. This year, I'm in a much better space and absolutely giddy with anticipation.

There are lots of potential challenges - last year the boat wouldn't start but we were able to find the home of the guy who rents some. Whatever, comes up, though, we will have each other and some good stories to tell.

See you on the other side.

leaning in

2011-10-20T10:11:00.000-04:00

A friend on Facebook shared a post by Alexandra Samuel about the practice of "leaning in" in the context of dealing with one of her kids' ongoing troubles with school:

Instead of the emergency visits that might come at any time, we decided to schedule daily visits to school, so both we and our kids would know when one or the other parent was going to appear. We told the teacher to count on our regular arrival time, and to set aside work we could do to be helpful while we were in the classroom. We opened our calendars, and made a schedule of who would cover which days. We stopped resisting, and decided to lean in.

“Leaning in” is the practice of accepting what you have tried to avoid, resist, or struggle against. As Tara Brach puts it in Radical Acceptance: Embracing Your Life with the Heart of a Buddha,
As we lean in, we are inviting, moving toward what we habitually resist. Leaning in allows us to touch directly the quivering, the shakiness, the gripping tightness that is fear. Whether it is a familiar but vague feeling of anxiety or a strong surge of fear, leaning in can help us become aware and free in the midst of our experience.

This post has stayed with me. And in the last few days, I've re-read it many times. I have a few issues in my life that I have been avoiding and the anxiety is mounting, subtly but gradually. Perhaps it is time to lean in.

growing up

2011-10-19T15:21:00.000-04:00

Daniel, who is eight years old, has been badgering us to let him walk the three blocks to school by himself. I'm not ready.

I've known for a while that this time was coming. Last year at this time, he was still holding my hand. Now he likes to walk a few steps ahead. I have to give him his hug goodbye before we are within sight of the school. When he walks into the yard, he doesn't look back.

A few weeks ago, I sent Daniel to the corner store down the block by himself for the first time. He came back clutching the chocolate chips he'd been sent for so tightly that half the bag had melted. And he was so, so proud.

Yesterday afternoon, Daniel asked Tim to ride ahead on his bike so that he could walk by himself. "Let me show you what I can do," he said. So Tim let him walk, circling the block a few times to check up on him and I waited anxiously at home for the knock on our door. Again, when he arrived home, my boy was so, so proud.

I remember the gut-wrenching anxiety I experienced when his brother was this same age and demanding to be allowed to walk on his own. In the years since, we have gradually given him more freedom and he's impressed us with his sense of responsibility - even in some very challenging situations.

It ought to be easier the second time around - and it some ways it is. I feel more relaxed as a parent since Sacha has acquitted himself so well. But I still worry every time one of my boys is out of my sight for too long.

Mostly, I don't like having to let them go. The days of thirteen year old Sacha sitting in my lap to watch a movie are behind us. Every hug from him is precious because they are doled out so sparingly. And Daniel is my baby. There are no little ones coming up behind him to help mitigate my sense of loss.

I know that kids must grow up and away from their parents. A big part of this whole exercise of parenting is about teaching them to be happy, independent people. I just wish it weren't happening so quickly.

And I still want to walk down the street, holding my baby's hand.

not worried

2011-10-18T18:35:00.000-04:00

I had a heart scan at the hospital today.

I rode my bike there up some pretty steep hills.

I was so engrossed in my book, I didn't hear the technician the first time he called me.

I fell asleep during on the scan table.

I guess I'm not too worried.

a perfect example (one for the pinxploitation hall of shame)

2011-10-17T14:32:00.000-04:00

From the Campaign for Safe Cosmetics:

Procter & Gamble's cosmetics division is making a big deal this month about supporting early breast cancer detection, an important issue. But we think P&G should start with prevention by promising to stop using chemicals linked to cancer in its products.According to the Skin Deep database, P&G still uses parabens – in particular, methylparaben – in hundreds of its Cover Girl, Max Factor, Infusium and other products.
Parabens are compounds widely used as antimicrobial preservatives in cosmetics products. They're also estrogen mimickers, and have been found in breast tumors.
A new study found that methylparaben can not only cause healthy breast cells to behave like cancer cells, but also interfere with the effectiveness of tamoxifen, an important breast cancer drug.

Please let P&G and everyone else know that this pinxploitation is completely unacceptable. If they care about more than pinkwashing their products, they would stop including carcinogens among the ingredients of so many of their products.

"wear black and save the rack" (from 'ihatebreastcancer')

2011-10-14T17:25:00.000-04:00

Words from a woman after my own heart:

...we here at the I Hate Metastatic Breast Cancer Foundation have a saying: If You Can’t Beat ‘em, Join ‘em.

I am so pleased to embrace this noble cause for all of us on this brave and selfless journey of ours. Yes, the I Hate Metastatic Breast Cancer Foundation has now latched on to a surefire vehicle to beef up the anemic state of metastatic breast cancer research*: BRACELETS! But not just any bracelets, MBC Bracelets.

Our MBC bracelets are not a gaudy yellow or girly pink but a tasteful and understated black. Each one comes with a photo and the personal story of a U.S. person who died from breast cancer last year. Choose from more than 45,000 stories! More added every day!

You can read the rest of the post at ihatebreastcancer.

please be aware

2011-10-13T16:56:00.000-04:00

Today is Metastatic Breast Cancer Awareness Day.

Six years ago, I thought I had a pretty good vocabulary but I didn't know the meaning of "metastatic" until I was diagnosed with breast cancer.

According to the American Cancer Society, only 15 per cent of women with mets will still be alive 5 years after their diagnosis. I'm one of the lucky ones ( stats are bogus anyway).

I think one of the reasons I get so angry at campaigns aimed at "saving [insert infantile name for 'breasts' here]" is that, for those of us with metastatic breast cancer, the breast was only the beginning. Our cancer has spread to our bones, brains, liver, lungs or skin. We are "the bad girls of breast cancer."

And we want you to know about us.

We are:

Delaney

Kristina

Dirty Pink Underbelly

Susannah

And we remember:

go read this

2011-10-05T11:28:00.000-04:00

Throughout BREAST CANCER AWARENESS month, I'm going to be featuring posts from around the web that really resonate with me on the subject of pinkwashing.

Today's post called Breast Cancer Awareness, Jersey Shore Style is from The Cancer Culture Chronicles.

"This is how "In Jersey / Jersey Shore Magazine" depicts what they think is important for the women of the Jersey Shore area to know about breast cancer...On page 52 we're treated to a Tickled Pink fashion spread of glossy made-up survivors in their breast cancer charity of choice t-shirts and then bedazzled in all manner of pink ribbon accessories and jewellery all available for purchase at listed stockists. As for the copy; here's my personal favorite..."showcased here in an array of pink items, they show a verve and vitality that is the essence of the spirit of all survivors...." Nothing says verve and vitality like a $139.95 Sparkle Strong Breast Cancer Survivor Necklace I guess!"

If you want to understand more about living with metastatic breast cancer and why some of us bristle (and even rage) about all the pink crap, check out the info on the right side of the blog. Well written, informative and entertaining. This blog is well worth reading.

being the first

2011-10-04T15:22:00.000-04:00

It turns out that a cardio-oncologist is a doc who knows something about the heart and oncology drugs. The guy I met yesterday looked way too young too have studied for that many years but really did seem to know his stuff.

Perhaps I'm just getting old.

Some things I learned:

My heart was permanently damaged by the Adriamycin. As a result, my ejection fraction has been bouncing around the low range of normal for years.

Echo cardiograms have a ten point margin of error, so my ejection fraction may not have dropped as much as it appeared.

I have no symptoms of heart failure.

Should I have the symptoms of heart failure, I should go to emergency (no kidding!).

There is no reason that I cannot engage in vigorous excercise (there goes my excuse for not running).

I don't need to stop Herceptin (awesome news).

I might have to go on a drug that protects my heart. The doc is on the fence about it right now but if my ejection fraction drops much more, than he will prescribe it.

Even then, I still won't have to stop Herceptin.

I am being sent for a MUGA - a different kind of heart scan - to see if it picks up anything different than my echo.

I mentioned that there must be some uncertainty, given that he likely hasn't seen many people who've been on Herceptin on a long term basis.

He told me that I am the first. But that there will likely be many more.

no pink for profit runs/walks for the cure v2.0

2011-10-03T16:50:00.000-04:00

The miraculous photo in which we all have our eyes open! photo: I. Hendel

There was some incredible coverage in the Ottawa Citizen this year. All the articles listed below were also in the Saturday print version of the paper (for my American friends: the Saturday papers have the highest circulation, as yours do on Sunday):

Seeing red over pink ribbon campaign.

Pink fatigue.

Think before you pink.

A short history of pink.

Getting choosy about sponsorship.

The Citizen also posted a short video to their web site:

Thanks so much to all the team members (including those who who were not able to attend the walk/run) and to everyone who donated. Special thanks to Andrea (who is the real woman wearing the pinnie in the Citizen photos) for holding my hand through the surreal filming of the video and to our honorary team members, Tim (picked up the team kits and t-shirts) Ian (took photos and custody of our stuff while we walked and Lee (stepped up with kid distraction when it was very much needed).

May we all be healthy and able to do it next year. And may there soon come a time when the Run for the Cure is a thing of the past.

"I'm running for...Deanna, Susan, Judy (and me).
In memory of Sarah and Rebecca."

photo: A. Ross

no pink for profit runs (or walks) for the cure in 2011

2011-09-21T14:15:00.000-04:00

No Pink for Profit has been formed again for the 2011 Run for the Cure.

Want to help raise the right kind of awareness and help fund advocacy, outreach and research?

You can make an online donation. It's easy! It's fun! It's for a good cause.

Your support is very much appreciated.

this could be me

2011-09-20T11:56:00.001-04:00

I've been on Herceptin for nearly five years. I think I'm alive because of it. And I'm fervently hoping that my heart bounces back quickly so that I can continue with treatment.

However, should I have any kind of relapse, funding for Herceptin will be withdrawn, despite the fact that studies show that switching up treatment regimens (pairing another drug with Herceptin) can give good results.

Earlier this year, breast cancer patients and advocates in Ontario fought for and won access to Herceptin for women with early stage breat cancer. Now, we must lobby to extend this access to women with metastatic breast cancer who experience a progression of the illness.

From the Canadian Breast Cancer Network:

We are reaching out to you today to let you know about the inequitable access to care for people living with HER2-positive metastatic breast cancer in Ontario.

The Issue:

HER2-positive metastatic breast cancer patients in Ontario who received a treatment called Herceptin when they were first diagnosed and who responded well to initial treatment are being denied access to the treatment should they relapse.

This is happening despite recommendations from Ontario oncologists and clinical evidence included in a report from Cancer Care Ontario, which states that the continued use of Herceptin in combination with chemotherapy is a valid treatment option for those whose breast cancer has progressed on Herceptin.

Even though there is evidence to support Herceptin beyond progression, government funding is not in place in Ontario – one of the only provinces to deny this treatment regimen for HER2-positive metastatic breast cancer patients. The BC Cancer Agency recently approved funding for Herceptin for HER2-positive metastatic breast cancer patients who have been previously treated with it.ii
How can YOU help?

Share your story! If you or someone you know has HER2-positive metastatic breast cancer and are currently being denied Herceptin treatment in Ontario, we want to hear your story. For more information, please contact me directly at 613-230-3044 ext. 221, amacisaac-butler@cbcn.ca

for Rebecca

2011-09-16T17:23:00.000-04:00

The memorial for my friend Rebecca is tomorrow. I won't be able to be there but I will be thinking of her all day. Maybe I'll do something silly and fun. I'll eat good food. I might even sing a little off key, in lieu of taking part in the karaoke that's planned for her celebration.

Because I can't be there, I asked my friends to go out and do something fun and dedicate the memory to Rebecca and let me know. Here are some examples of the the fun and the joy that was experienced as a tribute to her:

Maggie sang with her friends and dedicated the happiest song for Rebecca.

Nat danced in her kitchen to a band called “The Drop-Kick Murphys.”

A friend of Rebecca's went to the beach. She also said that Rebecca taught her “alot about about life.”

Jenny decided not to work late and went for a bike ride along the river. She says Rebecca reminded her that “life is a gift.”

Lee Ann said, “I dedicate my wonderful day on Saturday riding the life sized Thomas the Tank Engine with my 3 year old son Noah to your friend Rebecca. Such simple, beautiful kid fun, seeing this wonder through Noah's eyes.”

Lene thought of Rebecca as she took on a new adventure – her first photographic portrait commission.

Rebecca C. went for a swim with her mother in a moonlit pool. She said, “We were tired and could easily have passed on the opportunity, but in the spirit of your request, I urged us on. Gorgeous night, lovely memory, living in the moment. “

Rachel went to the amusement park and got on the “big bad roller coaster that I have been avoiding.”

Blondie wrote Rebecca's name on her hand and took her, in spirit to a big rock concert and to the state fair. She wrote about facing her fears and having on her blog.

Julie Harrison promised to do something that was “pure fun.”

Kate spent her week end at a horse show and “stayed and watched and cheered.” She said it was “great fun” and dedicated her time to Rebecca and all her friends and family with breast cancer.
Jillian spent the day at the beach with her family.

Tish laughed with friends at a party and with her sister at the gym. She dedicated her laughter to Rebecca.

Karin went for a swim on a hot day, “I watched my kids be brave and have a blast: RJ and RM held hands as they dove to the bottom of the deep end, and CJ rocketed down the slide sans life jacket. Floating in the water, I stopped to think of your friend Rebecca.”

Judy went out to dinner at one of her favourite restaurants and had a sour apple martini.

Jeanne went to the beach of her pups, “one of which is a pitbull named 'Denver'.”

Jojo went sailing on a beautiful lake.

Amanda cuddled and played with her puppy. She added, “yesterday as we worked on a swingset for our kids, I romped with him, talking to him about the pine cones he was chomping and chirping at him as he frolicked. It was incredible to really be present with him. As his red collar winked from between his floppy black and white hair, I was reminded of this post and of your wishes in Rebecca’s honor.”

Jill wrote, “I intend to ride my bike to the top of Mt. Montara within the next week, and when I do, I’ll sit on the little bench overlooking the Pacific and say a prayer for your friend, Rebecca, as well as send up some thanks for her gracing the lives of those who loved her. “

Shallowgal “blew off swim practice” and took her boys out for chilli dogs. She toasted Rebecca over her dinner.

Cait had a fun day with her kids and though about Rebecca as she pushed them on the swing.

Sylvia thought of Rebecca as she watched her daughter jump off the diving board for the very first time.

Darcy toasted Rebecca with friends and family as they gathered as a big group at a cottage with lots of good food and fun.

Celeste thought of Rebecca as she took a vacation with good girlfriends.

Michael paddle-whacked a tennis ball into the lake for his wolf-hound cross named Boo. He's sure that Boo would have loved Diezel.

In memory of Rebecca, Frederica went for a bareback ride on her daughter's pony. She writes, “The real fun started when she started trotting: she was going like a bat out of hell, I was popping up and down like a jackhammer trying to post, grinning from ear to ear.”

Andrea promised to have fun with her daughter.

Deb spent an evening knitting and drinking beer with two good friends.

Cathie tickled her girls, hugged them and rolled around on the floor with them.

Allie “stopped by McFatty for a burger and DQ for a strawberry shake.” She added, “Thinking also of Rebecca's family, of Diezel, and of the joy of a scooter and open roads. Thanks Rebecca for the steady example of choosing well, every day.”

And I went to a dog rescue fundraiser called Take the Plunge. We saw dogs pulling scooters, jumping off a dock into a pool, doing agility runs and just generally milling around. I lost count of the different breeds. The highlight was watching a 10.5 year old pit bull sail off a dock and fly through the air, as his owner fist-pumped in triumph.

Rebecca had a big impact on me. I miss her. I send much love to all those who will gather tomorrow in her memory.

go the (bleep) to sleep. and get up earlier.

2011-09-15T21:35:00.000-04:00

I live in a house full of night owls. Left to their own devices, my boys and their father would be up half the night and sleep into the late morning (or later, when it comes to my teenager). I think it's genetic, as many members of Tim's family have the same internal clock.

In contrast to them, I'm practically a morning person. However, I feel my most refreshed and energetic when I regularly sleep between the hours of midnight and 8am.

I don't subscribe to the notion that being an early riser is more virtuous but I do admit that it's more practical (especially when trying to get two kids to school on time in the morning), so for the last couple of weeks, we've all been getting up at 7. The first few days it was painful. It's easier now but I can't say that I feel bright eyed and bushy tailed at any point during the day.

I'm tired. And I'm finding that I'm not getting much more done, because I seem to need more sleep to compensate for getting up earlier.

Will it get any easier? Will my body adjust eventually? What's your internal clock like? Have you tried to change it?

(I edited this post as I sat with my 8 year old. It's 9:30 at night and, despite being tired all day, he's suddenly wide awake and full of energy. Please don't suggest a bed-time routine. We have tried it all.)

just slightly below par

2011-09-09T09:00:00.002-04:00

On Wednesday morning, I had an appointment with my oncologist. I had confirmed that we would do it over the phone and kept my phone handy to await is his call.

At 11:00, the nurse who works with Dr. G. called to say that I would be hearing him before the end of the afternoon, thus giving me several hours to work myself into a state of high anxiety. I'd had an echocardiogram and two CT scans on August 29 and I knew that my doc would have the results.

I had no reason (other than history) to believe that the CTs would reveal anything bad and I'd managed to pretty much forget about the results until the day I was to receive them. On that day, I became a nervous wreck. I jumped every time the phone rang and when the call I'd been waiting for finally came through at around 5pm, I was a mess.

My oncologist apologized for the delay, and, as always when I hear his voice, my annoyance and anxiety dissolved. He told me that both CTs were fine. I have lots of scarring on my liver (from the cancer) and a little scaring on my lungs (from the radiation) but that there was no sign of cancer anywhere.

Excellent news.

Then I asked about the echo, which surprised Dr. G. He didn't have the results in front of him and had to go look them up. When he did, he sounded a bit taken aback.

My ejection fraction is at 48%. The normal range starts at 55%, so I'm really just below that but it's enough of a concern to send me to a cardiologist and to cancel next week's treatment.

My concern is not that there is permanent heart damage (although it's a bit freaky to think that my poor heart is a bit over-stressed) because Herceptin damage is usually reversible. My fear is the length of time it will take my heart to bounce back and what my treatment options are in the interim. And what if the toxicity has built up to a sufficient level that long term treatment with Herceptin is no longer viable?

This drug has been my magic potion, the one I credit with my remission and the fact that I'm here today. I'm not ready to think about giving it up.

And I don't have to. Not yet. Going to try and save all my questions for the cardiologist and, in the interim, carry on with my happy, busy life.

Update: I have an appointment with a cardio-oncologist on October 3rd.

Cross-posted to Mothers With Cancer.

and so it begins

2011-09-08T13:05:00.001-04:00

Received September 6:

Hi Laurie,

Would you be interested in guest blogging for us in October? I have some fun ways to make it a great partnership for both of us AND for the fight against breast cancer. If you're interested, let me know and I'll send you the proposal!

Julia Fikse
Creator/President

Ta-tas® Brand www.savethetatas.com
Laughter Heals® www.laughterhealsgifts.com
Save the Ta-tas Foundation www.savethetatas.org

Sent September 8:

Dear Julia,

No thank you. I suspect that you didn't really look at my blog before making this offer. I have metastatic breast cancer - long past the stage where "saving the ta-tas" is an issue. I may have lost a ta-ta (despite your best efforts) but I am alive, which is what matters.

Also, while I do have a pretty good sense of humour, I don't find your products to be amusing (actually, I find those in the men's section to be distasteful and insensitive). I'd prefer to encourage my readers to donate to organizations that really make a difference and use all the funds (as opposed to 5% of sales) for advocacy, awareness, research and building community.

very sincerely,

Laurie

blowing my own horn

2011-09-06T16:24:00.000-04:00

Tomorrow, I will have a featured post on BlogHer.

Also, Judy from Just Enjoy Him (and Mothers With Cancer) really liked my book. And she said some very nice things about it. Since I am in awe of Judy, this meant a whole lot to me.

A little praise goes a long way for this girl. I feel like writing more now.

smiling can't cheat death

2011-09-01T12:20:00.001-04:00

I'm a reasonably happy person. And I believe that concentrating on the half full part of the glass has helped me to cope with many aspects of my life, including breast cancer. However, there have been times when a good wallow or a raging tantrum have been just as necessary and cathartic.

And I don't, for even a second, think that people who worried too much, or got mad or who didn't have a positive attitude brought cancer or their own deaths upon themselves. Nor do I believe that temperament or attitude is what causes one person to go into remission and another to succumb to the illness. I find the belief system that blames the patient to be repugnant.

In many ways, cancer is a crap shoot. It helps to have excellent medical care, good nutrition and the resources that help you cope with the disease and the treatments' side effects. But luck plays a big role in survival as well.

I've been thinking about this lately, and so it appears have other women. Yesterday, I stumbled on a great post at Uneasy Pink, by Katie, who, in turn, pointed the way to Coco, guest-posting at Journeying Beyond Breast Cancer. These women really tell it like it is.

Last week, Canada lost Jack Layton, a leader who was, by all accounts active, optimistic and happy. And we lost him way too young. Many media reports used the common phrase "lost his battle with cancer." Jack didn't lose a battle - there was no failure on his part - he got cancer and died. No amount of positive thinking could have changed that.

(Shout out to my friend Sharon, who first used the phrase "tyranny of positive thinking" in my presence. She has kindred spirits out there, too).

Cross-posted to Mothers With Cancer.

grateful through my tears

2011-08-23T12:20:00.000-04:00

"My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world." - Hon. Jack Layton (1950-2011)

2011-08-05T19:48:00.000-04:00

dogs can fly

2011-08-02T16:17:00.000-04:00

The day after I wrote the post about my friend Rebecca, I went to Take the Plunge, a fundraiser for local dog rescue organizations. It was a lot of fun. We had the chance to meet many different kinds of dogs and the people who love them. They came in all shapes and sizes, colours and temperaments. We also met a miniature horse and some ferrets. One woman was pushing a cat in a stroller. The cat wasn't strapped in and seemed quite relaxed amidst all the canine chaos.

The central event of the afternoon was the dock diving competition. We watched all kinds of dogs leap after toys into the pool. Some of the dogs needed to be persuaded to get out of the water. Most seemed incredibly pleased with themselves. Everyone - spectators, dogs and their human handlers seemed to be having a wonderful time.

This dog took my breath away:

I thought a lot about Rebecca as I sat in the sun; this was the fun event I had chosen to dedicate to her memory. And then the most incredible thing happened. I watched a pit bull terrier, among all the retrievers and border collies, launch himself off the dock and fly an incredible 18 feet. His owner jumped with joy and fist-pumped the air as she yelled, "Ten and half years old!"

I had goosebumps and tears in my eyes. I thought of my Jasper who didn't make it to his tenth birthday. I thought of Rebecca's pit bull Diezel who is waiting for a new forever home. And I thought of Rebecca and how life is far too short not to enjoy a day in the sun, doing the things we love.

It's not to late to do something fun in Rebecca's memory and let me know. The family is planning a celebration of her life, in accordance with her wishes (they're also asking for suggestions as to what to write on her urn). I'm tracking all the stories you send me and compiling them for the family. I'll eventually publish the list here too.

do me a favour: honour my friend by having some fun

2011-07-23T17:29:00.000-04:00

My friend Rebecca died this week. She was all of 37 years old (if I've done the math right) and she had metastatic breast cancer. She was also one of the funniest people in my online community. She was also generous, straigtforward and honest. My heart goes out to her friends and family - the people she loved, wrote about and who knew her best.

Rebecca left strict instructions that we were to shed no tears after her passing (I'm afraid I've let her down on that front but I've been doing my best) and that, instead of a funeral she wanted a celebration of her life. I'd love to join the party and to hear the stories that those closest to her would be bound to share. Because Rebecca took her fun seriously.

I won't be able to attend the celebration (Rebecca lived in Cape Cod) but I would like to do something. And I need your help.

1. In the next week or so, please go out and do something fun. Do anything at all, as long as it makes you happy. If you need inspiration, Rebecca loved dogs (especially her pit bull, Diezel), cooking, eating out (her restaurant reviews were among my favourite blog posts), her scooter, her little car, road trips, NASCAR, kick boxing, books, funny movies and music. If none of these things appeal to you, please go out and do your own thing. If you like, bring someone with you to join in the fun.

2. Let me know. You can leave me a comment on this blog, send me an email (laurie dot kingston at gmail dot com) or message me on Twitter (I'm @lauriek). Just a few words to let me know what fun thing you did in Rebecca's memory. I'll compile a list and make sure that it gets to her family.

That's it. It already makes me feel happier, thinking that there will be a little more joy in the world this week. I think Rebecca would approve.

brain scanned

2011-07-04T15:31:00.001-04:00

Update: My brain is perfectly normal. I'd still like to see the pictures but normal is very, very good.

I had a routine brain scan today, my first in two years.

It was pretty uneventful (they got the vein for the contrast dye on the first poke) and was over relatively quickly.

I can call for results in a week or so. And I'll probably be told that everything is fine.

I wish things were like in the movies, though and a few minutes after the test, a doctor would look at the images and then we'd discuss them.

I never get to see the pictures. Wouldn't you like to see images of your brain?

This is Patrick Denker's brain. I would like to see mine.

the good things about being Canadian

2011-07-01T09:00:00.011-04:00

Today is Canada Day.

I've been feeling pretty out of sorts about my country lately, for a whole bunch of reasons (the most recent of which is our opposition to listing asbestos as a banned substance at the United Nations. Asbestos is a known cause of cancer. This kind of cancer is solely caused by asbestos. Asbestos is banned in Canada. But we still export the stuff. So it's OK to give people in other countries cancer. Shameful.)

And I really don't care about the Royal Visit.

I've only been to Parliament Hill once on Canada Day and that was more than twenty years ago, before I lived in Ottawa.

I'll be spending the day on the road, in advance of an important family event in Toronto. We'll be listening to talking books, breaking up fights between the kids and trying to convince the dog to stay in the back with the suitcases. And I won't feel like I'm missing anything.

But I am a proud Canadian, despite my country's bad choices. And July 1 always provides me with an opportunity to think about what that means. So, in no particular order, here's this year's list of things I like about my country:

Politeness. The other day my son stepped on my toe. We both simultaneous said, "I'm sorry!" There is a certain level of courtesy in our culture that I have come to really appreciate. On the street, between strangers and at home, with those we know best.

Moderation. My younger self is howling with laughter at this one but we Canadians mostly avoid excess of all kinds and I've come to really appreciate that.

Universal health care. Do I really need to explain this one?

Gay Marriage. For six years now. It's not going away and it's no big deal. Except that it is.

Neighbourliness. Canadians are generally good neighbours. We tend to be "live and let live" types (occasionally to our detriment but, mostly, it's a good thing).

An appreciation of good beer. It's not just about quantity but quality too.

The weather. I can't believe I'm saying this but the changeability of Canadian weather is highly entertaining (when it's not downright disastrous). With weather like ours, there is always something for strangers to chat about.

Pedestrian friendly cities. I think the best way to get to know any place is to walk or ride your bike. I love that I can walk so many places in my home town (and it's a good thing, too because our public transit sucks).

And I love that many of you will disagree with me on some of these things (heck, with the exceptions of beer,gay marriage and health care, I may change my own mind tomorrow) and some of you will let me know. Politely.

Happy Canada Day! Have a moderate amount of fun and enjoy yourselves - courteously.

how i've changed

2011-06-30T15:07:00.001-04:00

When I was a young adult, I definitely considered myself to be an extrovert. Then, in 2007, a year or so after my cancer diagnosis (and after being on leave from my job for most of that time), I did the Meyers-Briggs test. The person who explained my results to me said that mine was the most even split between introvert and extrovert that she'd ever seen.

Fast forward to last weekend when I attended the PAB conference. Walking in the door on a Friday night to an environment where it felt like everyone already knew each other was terrifying. My chest tightened, my breathing became shallow and I felt something between "slightly queasy" and "I think I'm about to puke my guts out."

I texted Tim, "This is so hard" and sent out similar messages to the Twitterverse (I will be forever grateful to Flutter for her words of comfort and encouragement).

And then I settled in for a great conference. Did I hide behind my Blackberry? Yes, lots. Did I sit by myself instead of joining other folks? Most of the time. Did I go on the evening boat cruise? I did not (my poor brain was too tired from all the big ideas and and the constant exciting but draining stimulation of the day). But I stayed and I learned and during Saturday lunch and over a couple of breaks I forgot to feel awkward and had a really good time. I even stood up to ask a question on the last day (although I forgot the question when I had the mic in my hand. I found something to babble about). For the most part, I think that's good enough.

Paralyzing anxiety disorders run in my family. And I know that the more you give in, the worse it can get. And I know that I've missed out on some truly wonderful experiences over the last couple of years because I've been too scared to go. I confronted my fear last week end. And I'm proud of that.

Next up: Blogging Out Loud Ottawa. Every year, I've found a reason not to go. This year I'm going to be there (hold me to that, would you?). There will be people I know and like. It will be fun. All I have to do is get myself through the door.

mind blown

2011-06-27T15:31:00.002-04:00

PAB2011 group photo by Maurizio Ortolani, uploaded to flickr by Martin Jones.

A chance encounter on Bank Street with my friend Andrea Ross led to a plan for a dog walk, which led to a conversation about "PAB", which led to me having my mind blown.

The conference is called PAB 2011 (short for Podcasters Across Borders), and is for anyone who is a creater of "content" of any kind, using any medium. You don't have to know a thing about podcasting to attend, just an open spirit and a readiness to share and absorb ideas. It took place this past week end (June 24-26) and my brain is still very, very full.

This year's theme was "Your story needs to be told. Well." As with every year for the last few, the venue was the wonderful Fourth Stage of the National Arts Centre (no fluorescent lights!) and the setting was intimate. There were two longer keynotes and many more 5 minute "jolts" (this link is to Andrea's amazing jolt from last year, which I have quoted many, many times), juxtaposed with 40 minute presentations and questions from the audience.

There was so damn much to take in and almost as much to tell that I'll be brewing blog posts for the next few days (which will make a change around here. I've been an unmotivated blogger of late). For now, I'll just say that my brain is resonating like the inside of a bell.

I am very, very grateful. To Andrea for her friendship and inspiration, to Mark and Maureen for donating a ticket they could'nt use (and asking for nothing in return) and to Mark and Bob for concocting, creating and coordinating this indescribable thing that is PAB.

treatment week

2011-06-24T15:10:00.000-04:00

I still miss you so much

2011-06-18T20:22:00.000-04:00

short term planning

2011-06-17T09:00:00.001-04:00

I kind of left you in suspense yesterday.

I was sitting an exam room, waiting to see my oncologist to discuss whether I could continue my break from chemo.

Here's what happened next:

We waited.

We played a little Lexulous.

I knit. My hands shook a little.

And then the door swung open and Dr. B. entered the room.

Dr. B. is not my oncologist. The cancer centre has a title called GPO (which I assume means general practitioner - oncology) for doctors who work with the oncologists. I hadn't seen Dr. B. in more than a year and without hesitating, we hugged each other - something I've never done with any doctor. She's wonderful and she's the only doctor I trust as much as my oncologist.

After a physical exam (liver is where it should be and the size it should be. Chest sounds fine) and looking over my bloodwork (everything normal), we had the following conversation:

Dr. B.: "I'd bet you'd like to extend this break from chemo."

Me (nodding vigorously): "Yes!"

Dr. B.: "For the summer?"

Me: "Or longer? I'd love to think about longer term plans."

And...she shook her head. She said, "When it comes to metastatic breast cancer, there are no 12 month plans."

While it may seem like forever to me that I've been at this, it really is still pretty new. And as I've written before, many times, there is just too much uncertainty to make any longer term treatment plans or even to be absolutely certain what choices are the right ones.

It was very good having Tim there, though, as he brought a different perspective to the table. I wanted to choose between a short break and an indefinite one. Tim's concerns were more about the risks of taking even short breaks from chemo. He loves me and he wants me to feel well but also to stay healthy.

But Dr. B. explained that the break from chemo is not just to give me some respite from side effects (although I needed that, both physically and emotionally) but to help my immune system and bone marrow to rebuild so that chemotherapy, when I need it again, will continue to be effective. She also said that most stable metastatic breast cancer patients need to take breaks long before I did.

This was a breakthrough moment for me. I've been feeling like my body failed me by becoming run down and developing more side effects. I felt like I was wimping out by feeling an emotional need for a break. I felt that I just wasn't strong enough.

I felt ashamed.

However, it turns out that I'm not taking an irresponsible risk by taking a break from chemo. I'm readying my body for whatever lies ahead. And I'm not weak. I've been doing this for more than five years, while continuing to live my life. I'm actually pretty damn tough.

It was a great appointment. I feel relieved of an awful lot of guilt I didn't know I was carrying around. I feel hopeful. And my step was a little lighter today.

So for the next three months, I'll continue on the Herceptin. In early September, I'll have a brain scan (because Herceptin doesn't cross the brain blood barrier) and an abdominal scan. I'll do more bloodwork. And we'll plan for the next three months.

not so jaded after all

2011-06-16T19:38:00.000-04:00

Yesterday, I had an appointment with my oncologist, the first since our decision that I should take a break from chemo and do Herceptin only for three months.

I usually do my appointments over the phone but I decided to go into the cancer centre so that I could have a physical exam and meet with him face to face. Also, I wanted Tim to come with me, so that he would get the same info as I did first hand and have a chance to ask questions.

One of the great things about doing appointments on the phone is that I can carry on with my life around the house as I wait for my call. I was reminded of this after waiting first in the waiting area and then in the exam room for nearly an hour.

But it was worth it.

The first person I met was the nurse who works with my oncologist. It was the first time we met face to face. After checking me in, she hesitated for a moment, then looked me right in the eyes and said, "I read the article you wrote for the CBCN newsletter (after the conference I attended last fall). It was wonderful. You are very inspiring."

I hope that I sounded as pleased as I felt when I thanked her. It always means a lot to me when someone is moved by my writing but to hear that a nurse who hears all kinds of stories every day was inspired by me...I was floored.

pirate day

2011-06-03T14:18:00.000-04:00

in translation

2011-05-28T13:00:00.001-04:00

The cancer centre has implemented something new. When patients check in for treatment, we're asked to fill out a questionnaire related to our well-being (it has some acronym but I can't remember it). We're given the option of filling it in on a central computer but I'm really squeamish about germy public terminals. I always ask to fill the thing in manually (furthering my feeling that I am more of a Luddite than some of my seniors).

Filling out the form involves reading statements such as "I am in pain" and then circling a number between 1 (no pain) and 7 (excruciating pain - or something like that). Most of my numbers were very low except for the ones about my emotional well being and sleep habits. My answers resulted in the following conversation with the well-meaning nurse who checked me in for treatment:

Nurse:

"You're depressed. Why?"

Me:

"I'm just a little blue. Five years of doing this is a long time." (Translation: "I'm pissed off and fed up and I have survivors' guilt.")

"I'm seeing someone at the psychosocial oncology centre." (Translation: "I don't want to talk about it with you, in front of the all the strangers in the room").

"The crisis is over and now it's all hitting me." (Translation: "I think I have PTSD. Did I mention that I'm pissed off and fed up?")

Next time, I'm stuffing the damn form into the bottom of my purse.

kitchen conversation (he's so, so right)

2011-05-27T13:00:00.002-04:00

My spouse (after listening to lengthy rant #342 yesterday): "Not to excuse that person's bad behaviour, but a lot of things piss you off these days."

Me: "True."

Spouse: "Oh! We forgot to put the compost out!"

Me: (String of expletives, unprintable in a blog my children might read).

Spouse (Meaningful silence)

Then we both burst out laughing.

I need to get some perspective.

But at least I can still laugh at myself.

generation gap

2011-05-26T19:47:00.000-04:00

On Tuesday, as I waited at the Heart Institute for my regular echocardiogram, I had the following brief conversation with the older gentleman sitting beside me.

Me: Is that a Playbook?

Him: I don't play! This is an ipad!

Me: Oh. I was just curious about the Blackberry version of the tablet.

Him (scornfully): Do you have a Blackberry?

Me: I do.

I didn't bother explaining that I don't find touch screens to be intuitive and that I prefer an actual keyboard for sending emails and texting. Instead, I pulled out my knitting, thus eradicating all doubt that I was the Luddite in our conversation.

has anybody seen my boob?

2011-05-21T16:45:00.001-04:00

As anyone who has ever been to my house can attest, the place tends to be ~~a total disaster~~ pretty cluttered. We lose stuff all the time, only to find it months or even years later, after it's already been replaced.

But I have to admit that never in my wildest dreams did I ever think I'd find myself typing this sentence:

I can't find my prosthetic breast.

We've actually been making some inroads in terms of beating back the clutter. But some rooms are getting worse before they get better. And our bedroom is complete tip.

Now admittedly, I don't wear my prosthesis all that often. But there are days when I want to fly below the radar. There are clothes that just look better when they're symmetrical. And I haven't seen my fake breast for weeks.

Could I have absent-mindedly stuck it in a drawer that I haven't checked?

Could it have become mixed up in the bags of clothing destined for donation?

Could it be under the mounds of clothes yet to be sorted?

Could I have left it somewhere?

It's a mystery.

If you find it, please let me know.

Or just leave it in my mail box.

Update May 26: We found it! It was in a suitcase. In our bedroom. From a trip on which neither I nor the boob were in attendance. I think I took it off one night and too ~~lazy~~ tired to put it away, popped my bra with the boob still in it, in the open suitcase. Then, the suitcase was closed and left. Three weeks later, when my love finally unpacked - he found my prosthesis. Mystery solved.

"none of us knows when we are going to die"

2011-05-19T14:52:00.000-04:00

On April 25th, Alaina Giordano lost custody of her children. A North Carolina judge ruled that her two kids need to move to Chicago to live with Giordano's ex-husband. She based this decision, in large part, on the fact that Giordano has Stage 4 breast cancer.

Visit msnbc.com for breaking news, world news, and news about the economy

I can't be articulate about this story, except to say that I work very hard to make sure that my kids will be all right- no matter what happens. I wish I could protect them and all those who love me from the realities of cancer. But do I think that cancer makes me a less fit parent?

Not on your life.

Want to read more?

I first read about this on BlogHer, where Jenna argued very articulately that anyone who has ever been ill or ever might be should care about this story and the frightening precedent it has set.

My friend Judy (from Mothers With Cancer) wrote a beautiful response called "We Are All Terminal."

You can read Alaina's own words on her blog, Beauty in Truth.

I couldn't find a single post or comment by anyone who agreed with the judge's ruling.

For that, I'm grateful.

selfish (dear loved one)

2011-05-17T22:10:00.000-04:00

I'm sorry that my fear becomes yours.

I regret that you get pulled into my panic.

I feel ill when my every cough, ache or bump twists your insides the way it does mine.

I would prefer to protect you.

I want to watch you smile, hear your laugh, feel your heart thump with joy when you pull me to your chest.

I don't want to make you scared, or sad or worried.

But I can't wish you weren't ever scared or sad or worried.

Because I need to share.

Because I need not to feel alone.

Because I need you.

beautiful eyes

2011-05-12T13:22:00.005-04:00

That's what struck me when I met Sarah in person: she had the most beautiful deep brown eyes I had ever seen, with a lovely smile to match.

It was February 2010 and we were both in attendance at the Annual Conference for Young Women Affected by Breast Cancer. We had met online through our online community, Mothers With Cancer.

A short time after we met, Sarah found out that her breast cancer had become metastatic and she began treatment anew. A few weeks ago, she learned that the cancer had spread to her brain and she started radiation treatment. A couple of days ago, she was admitted to hospital with breathing issues. Last night, she passed away.

I won't claim to have known beautiful Sarah better than I did. But I did consider her my friend. And I will miss her.

Here are some things I knew about this remarkable woman:

She loved her three daughters very much and she was incredibly proud of them.

She was happily married.

She was a talented photographer.

She loved animals, especially dogs and horses.

She had an appreciation for good coffee.

She left this world way too soon.

Sarah, you will truly be missed. My heart goes out to your family and to all who loved you.

You can read more about Sarah at her blog, Spruce Hill. Tributes have also been posted by Jenny (cross-posted to Mothers With Cancer), Susan, Nicole, Ree and Mary Beth.

Note: Blogger was down for about 20 hours and when it came back up, this post was gone (as were the comments from my previous post). If you are seeing this twice in a row on the blog, it will be because Blogger has returned it to me.

taller than i

2011-05-11T13:38:00.000-04:00

My beautiful first born turned 13 yesterday. The cliche is true - it happens in the blink of an eye. He's a good person - smart, creative, caring and funny. We are so proud of the man he is becoming.

fiction: tabloid inspired

2011-05-09T09:00:00.005-04:00

A couple of weeks ago, the homework for my writing class was to take a headline from a tabloid and use it as a jumping off point for a more serious short story or poem. I was uninspired by the headlines in my grocery star tabloids ("Brad Gives Angie Ultimatum!" "Jennifer Lopez Fights Eating Disorder!" "Larry King Marries Again!") and decided to go to that old standby - the now sadly defunct Weekly World News. I stole a legendary headline from them. The monologue that follows is all my own.

"Bat Boy Found in West Virginia Cave!" by Bill Creighton, Weekly World News, June 23, 1992

I blame the doctor.

I wanted a baby so badly. The other doctors I'd seen wouldn't help me, so I sought this one out. The office was in a bad part of town and it was dark and smelled a bit funny but he didn't ask me many questions. He said he would help me get pregnant.

And he did. I don't know what the shots were for or what was in the medicine he gave me to drink but I didn't care. I would soon have my baby.

It wasn't a difficult pregnancy. I didn't get too sick. The last few months were hard when I had trouble sleeping but that was it, really. It would have been more fun if there had been someone – anyone - in my life to share in my excitement, throw me a baby shower or help me set up the nursery. But I didn't mind so much. Soon I would have a baby to love. I wouldn't need anyone else.

He was born right on his due date and, from the first, I could tell something was wrong. The first time I held him in my arms I felt not love but revulsion. This was not the child I was meant to have. He was not my baby.

In those first few months he cried a lot. I made sure that he was fed and his diapers were dry but for the most part, I left him in his crib. He was safe there and I did not have to look at him.

As he got older, I continued to cringe at his touch. When he tried to crawl in my lap, I would push him away. When he cried, I left him to it. No one could say that I did not take good care of him. He had food and clothes, I even bought him books and toys. But nothing could make me love him.

I don't feel too guilty about that because it soon became clear that he was a bad kid. The first time he got into trouble in school, I went in to meet with the his teacher. After that, I didn't bother answering her notes or phone calls. If he couldn't get along with the other kids there was really nothing I could do.

The first time he ran away, I called around to the neighbours. The second time, I left the door unlocked so he could come in when he decided to come home. The third time, I locked it.

The first time he was arrested, I went down to the police station right away. The second time, I let him spend the night in jail. The third time – I decided he was the state's problem not mine.

A short time after that, he stole a car from the school parking lot. I haven't heard from him since. This morning I got a call. He was found hiding in a cave in West Virginia. They want me to come to him. But what would be the point?

That child, that particular child, was a mistake. He should never have been born.

I am sad, though. I do feel a loss – not for that child but for the baby I might have had. The mother I might have been.

Maybe I should try again.

This time, I'll go to a different doctor.

alone on mothers' day

2011-05-08T13:58:00.000-04:00

When my spouse first mentioned that he was thinking of taking the boys to the Toronto Comic Arts Festival in Toronto, I protested, "But that's Mothers' Day week end!"

Then I stopped to think.

"Would you be taking both boys?"

"I think I'd have to."

After a moment's thought (empty house! to myself! quiet writing and reading time!), I bravely said, "I think you should go. I don't want to deprive the boys of this chance."

My spouse (clueing in) "Do you want your Mother's Day present to be a week end by yourself?"

Me shaking my head and stammering and not quite keeping a straight face, "I'll miss you."

So they went. And I have missed them. I've also slept more than 8 hours each night, done a considerable amount of cleaning, read a book, watched stuff on Netflix, had dinner with a friend and taken the dog for a run. I still have time to catch up on some writing, make soup, take the dog out again and do most of the laundry. I'll be starting the week of with far less stress than I often do.

My boys had a lot of fun this week end doing things I wouldn't have particularly cared to do (even Grandma went to see Thor last night). I felt a pang of guilt when they left but I quickly let that go. It sounds like they've had a great time. And soon enough they will be home and I will once again embrace the chaos of my family.

Happy Mothers' Day!

not really the end

2011-05-03T23:07:00.000-04:00

Did you know that the world is going to end on May 21st, 2011? I saw a guy on a street corner today with a sign that said just that. And then I saw a big-ass caravan with the same message.

Contemplation of our impending collective doom helps to put yesterday's election into perspective. It doesn't matter if the Conservatives were gifted with a whopping majority if none of us is going to live long enough to deal with the consequences. There must be more of these end of the world types than I previously suspected. That would help me understand how it is that so many of us thought endorsing the Conservatives would be a good idea.

Or something. You'll have to forgive me, it's been a hell of a day. I stayed up way too late watching the election results and then stumbled around like a zombie all day. I'm delirious.

I even went across town to an appointment, only to discover that it's on Thursday.

It was a very odd feeling last night to watch the NDP take over 100 seats (the previous high having been 43) and not feel elated. Proud, yes but not elated. I just kept watching the Conservative and NDP numbers rise at the same time and feeling like my head was going to explode.

Those of us who oppose pettiness, meanness and bigotry and who support human rights and democracy (not to put too fine a point on things) have four years to get our act together.

And I think we need to really start screeching about proportional representation.

Meanwhile, I really am thrilled that my party is going to be the Official Opposition. There is hope for the good guys (thanks, good guys, for working so hard to get yourselves and like-minded folk elected). I'm thankful to all the volunteers, staff and veteran politicians and candidates who worked so hard to make this happen.

And, even if I am slightly hysterical, I'm choosing to repeat the words of one of the surprised, young, brand new MPs from Quebec, "It's going to be all right."

how he moves in the world

2011-04-29T13:04:00.000-04:00

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

i could lose myself in this.

2011-04-21T14:19:00.000-04:00

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

2011-04-19T16:36:00.000-04:00

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

2011-04-18T12:45:00.000-04:00

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...

2011-04-15T09:00:00.001-04:00

...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

2011-04-14T09:00:00.005-04:00

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

2011-04-13T13:53:00.000-04:00

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

2011-04-11T14:07:00.000-04:00

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

2011-04-08T13:40:00.000-04:00

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.

2011-04-07T14:53:00.002-04:00

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

2011-04-06T13:32:00.000-04:00

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?