beginning to feel a glimmer...

better than yoga

Lucy could give lessons in how to relax.

in other news

My children are still very beautiful.

(photos: Mary Anne Folckomer Register)

melancholy meme

These are questions from the Proust quiz in a recent issue of Vanity Fair magazine. I stole the idea from a friend (she did it on Facebook, so I won't identify her here) and I've been thinking of it ever since.

It was interesting to do. My answers reflect the fact that I have been in a somewhat melancholy mood of late. I tried to answer without censoring myself.

Feel free to answer the questions in the comments or to link to your on blog if you do it there.

What is your idea of perfect happiness?
Being somewhere beautiful, being with someone I love. Happiness can come out of nowhere. I am better trained to notice it now.

What is your greatest fear?
That I will die and my kids will forget me.

What is the trait you most deplore in yourself?
Lack of discipline and the fear that causes it.

What is the trait you most deplore in others?
Intolerance of difference.

On what occasion do you lie?
Sometimes to protect others' feelings. Occasionally to protect myself.

What is your greatest extravagance?
It used to be shoes. I do like nice glasses but that's only every couple of years. I'd have to say that now, it's eating out and yarn.

What is your current state of mind?
A little fragile, anxious and blue. Figuring out how to get past it.

What is the quality you most like in a man?
Intelligence. The ability to laugh at himself. And if he's in love with me, that's pretty attractive, too. OK, so that's three. I did say that I lack discipline.

What is the quality you most like in a woman?
Intelligence, strength and a sense of humour.

Which words or phrases do you most overuse?
Lately, it's "Oh, for pity's sake!" Trying to excise the potty mouth.

When and where were you happiest?
No particular moment in time. In PEI with T., in London with S., at the family cottage, in the arboretum with the dogs...

Who are your favorite writers?
Depends on my mood. John Steinbeck, Jane Austen, Joseph Boyden, Sarah Waters...and lots of mystery novelists too.

Which talent would you most like to have?
I wish I could sing.

If you could change one thing about your family, what would it be?
I'd make us all appreciate what we have.

If you died and came back as a person or thing, what do you think it would be?
A well-loved dog with a stay at home alpha human and a family that loves me, walks me and feeds me well. In other words, I would come back as one of my dogs.

What do you dislike most about your appearance?
Where to begin? Trying to be healthier in my attitude about this. But my weight (exacerbated by lymphedema) is getting me down lately. And it would be nice to have my breast back.

Where would you like to live?
Somewhere where there is no winter.

What is your most treasured possession?
If you agree with me that the dogs are family members and not possessions, then I guess that would be my raven ring.

What do you regard as the lowest depth of misery?
Being 38 years old and learning that your liver is riddled with tumours and you don't have long to live. Needing morphine to control the pain for months. Having your heart ache on behalf of those who love you, especially your kids.
And life really is pretty good when you climb out of those depths.

What do you most value in your friends?
Loyalty, love and and humour.

What are your favorite names?
Sacha
Daniel
Katya

What is it that you most dislike?
People who think they have already learned all there is to know. And cancer. I don't like cancer either.

What is your greatest regret?
Not maintaining friendships with some people who were very important to me.

How would you like to die?
Painlessly and after having lived a long life.

What is your motto?
Be good.

i've never liked rollercoasters

Are you sitting comfortably? This is going to be a long one.

In late August, during a regular appointment with my medical oncologist, I was informed that my latest brain scan revealed a tiny spot on my cerebellum, exactly where mytumour was in 2012. I was going to write that I was blind-sided but I really wasn't. There had been lots of little signs over the course of the summer that my balance was compromised. At one point, while I was with my family in New York City, I had stood up and almost fallen over, catching myself against a wall. I'll never forget the very quick glance I exchanged with Tim, before carrying on with my day. A new tumour was something I didn't want to think about and I had fairly successfully succeeded.

“I'm never going to lie to you,” Dr. G. said during our regular phone appointment, before delivering the news. He also reassured me that the spot was tiny and the situation was “fixable.”

I told family via email, as well as close friends that I had a new tumour. We told our kids at dinner that night. I was outwardly calm but inside, I felt devastated. Although I had been reassured that this tumour could be easily disposed of, I felt like it was the begin of the end. If some stray cells had escaped treatment and metastasized so quickly, then others would surely follow. This new spot might be treatable but the next could easily – even likely – be some place treatment couldn't access. I'm so afraid of this possibility that I've never been able to put it into words (I have notes for a blog post entitled “my worst fear” that I've never been able to publish).

A week after this phone call, Tim and I went to the cancer centre for a brief appointment with my medical oncologist, followed by the radiation oncologist who'd treated mewith the Cyber Knife after conventional surgery (we refer to him as the Gallic Shrugger because of his eloquent non-responses when we were planning treatment in 2012). This time, Dr. GS dropped a bombshell: It was possible that the new spot was not a tumour but necrotic (dead) tissue caused by radiation. He told us that necrotic tissue can grow and tends to appear 3-18 months after treatment. He explained that even my wonky balance could be explained away by scar tissue building on my cerebellum.

We were stunned.

And giddy.

I might have had a glass of wine with lunch.

A week after that, we met with Dr. S., the neurosurgeon I liked and trusted so much in 2012. It was hisadvice that we eventually followed for treatment and he performed my nine hour brain surgery. We always wait for hours to see him but it's worth it. This time, he'd shown my scans to several other doctors. He said that while my case was “perplexing” (not something you want to hear from a medical professional), they were fairly confident that the spot would turn out to be necrotic tissue or easily removed by surgery. He suggested that we wait a few more weeks and do another, more precise scan that would also measure activity (which might identify a growing tumour, versus inactive, dead tissue).

Four weeks later, I had the brain MRI. A week after that, I received the good news: my surgeon was prepared to say that the new spot on my brain was very likely necrotic tissue. No treatment is necessary at this point, unless I start to feel unwell. We'll just make sure to monitor for any changes. I heard the good news from all three doctors in separate appointments. Each, endearingly, was practically jubilant.

Oddly, I was not. I was definitely relieved but it all felt anti-climactic. We didn't even celebrate. I felt embarrassed to have to go back and tell everyone that I didn't in fact have a tumour (I know this is ridiculous. This news was extremely well received). Surprisingly (or perhaps not), I mostly felt tired and angry that we'd been put through this trauma.

I'm mostly over that now (but not entirely) and I've trying to immerse myself in the things in my life over which I have some control. Until today, I have not felt able to share this story in this space. I haven't felt much like writing at all. I've finally just decided to spew it all onto the page because it feels somehow dishonest not to have blogged about it.

It's done now.

Time to exhale and move on to the next thing.

but i have an excuse (actually i have a few)

I bailed on National Novel Writing Month on the first day, having written just under 700 words.

I felt like there were too many other interesting bits of writing that I wanted to do, including continuing to edit last year's novel.

And then my life became insane. I've been really hard on myself for all the things I'm not doing lately. This week, though, I've had two people who are very important to me (my coach/therapist and my friend DM) listen to me unload and then tell me that I would have every right to feel overwhelmed with a fraction of what I've got on my plate.

I tend to be hard on myself because I don't work outside the home right now. If I don't go to a job I feel like I should just sail through my other commitments. It felt really good to list everything going on in my life and have two women I respect offer support and sympathy. I've decided that I need to cut myself a lot more slack.

I can do NaNoWriMo next year. I'm OK with that. But I did feel a pang when my son sent me this video:



NaNoWriMo was a fun kind of crazy. I just couldn't let the rest of my life go to do it this year.

makeover day

We arrived at the studio very early.

The anticipation was far worse than the experience of being on camera, which went pretty smoothly. And I didn't fall down!

The Fab Four with Tony from L'Elégance Hair (Tony gave us hours of his time - all day Monday and early Wednesday morning - taking great care with our colour and cuts. This lovely man is an artist. You should all go to St. Laurent Centre and get him to do your hair).

My favourite interviewer.

Blogging on the fly today (more pics and words about all of this soon) but I didn't want to let another day go by without acknowledging those who made this possible.

My friends AB for nominating me, SS for coming on Monday and MR for getting up early and joining my family at the studio.

My man and my boys (all photos courtesy of SKW) for the nomination, for getting up early to come to the studio and cheering every step of the way (and for saying that I was beautiful BEFORE I had the makeover).

The staff at Laura, Town Shoes, and L'Elégance Hair Salon.

Tasha and Renée from the St. Laurent Centre for the styling and the support.

To the lovely and talented woman who did all of our makeup on Wednesday morning (her name is escaping me. If you know it, please let me know so I can credit her).

And most of all, to Bernice from the St. Laurent Centre and Beth from the Ottawa Regional Cancer Foundation. These women are dynamos who combine talent and determination with an enormous amount of compassion and kindness.

And finally, I need to mention Paula, JL and Tanya - the women with whom I went through this experience. The love, support and joy that each felt for each other and for me is impossible to express in words. Thanks so much for being so beautiful. I really do love each one of you.

It must be mentioned that this was all in aid of the Courage Campaign of the Ottawa Regional Cancer Foundation. The Foundation is building a Wellspring Centre that will provide "emotional, psychological and educational support, free of charge, to individuals and families living with cancer." As a an ongoing cancer patient, I can tell you that this the kind of thing that Ottawa needs desperately, to go along with the cutting edge medical care from which we all benefit.

It's not too late to make a donation! (The St. Laurent Centre, in addition to funding the makeovers, donated an additional $10,000 to the campaign. I know where I'm doing my Xmas shopping this year).

what i did on my november vacation

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.

aware of the irony

Life is funny.

This morning was perfect weather for a bike ride. The sun was out and the temperature climbed to 17C (that's 62.6 in American). It was my first time on the bike in more than a week - since before the plague toppled my family, like a series of dominoes.

It was a fun ride, and I didn't even mind the big hill I have to climb on my way to the hospital. I arrived twenty minutes after I set out, a little sweaty and with my heart pumping. As I locked up and headed into the cancer centre, I noted with pleasure that I hadn't been coughing.

"It feels good to be healthy."

I very nearly said it out loud.

I was suddenly struck by the absurdity of my situation. Here I was, going to get my bloodwork done the day before chemo and thinking about how healthy I am.

Three years ago, at almost exactly this time of year, I learned that my cancer had become metastatic. I don't think I could have imagined this day, when I'd be riding my bike up Smythe Rd. and thinking about how healthy I am.

So, as I was saying at the beginning of this post - life really is pretty funny.

Cross-posted to Mothers With Cancer.

taking stock

(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

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.”

first one, then the other

My older son went back to school this morning. I did a little happy dance in the hall after he left. It's not that I mind having him around but the kid has to go back out into the world some time, you know?

And then of course, my six year old woke up with a sore throat. He really doesn't seem too sick to me (he had the first part of the H1N1 shot last week) but these days, I prefer to err on the side of caution (we are relieved that there is no coughing, as D. has asthma and things can get scary pretty quickly).

We've been hanging out in our pajamas on the couch. I don't know if this will help me reach my deadlines (or my NaNoWriMo goal) but it's pretty sweet.

outside the zone

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.

late to the party

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

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

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

Bob from Bob's Burgers

"Best Group Costume"

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

Space Cowboy, inspired by Sparks Nevada

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

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

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

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

mind body spirit

Thanks to Andrea for the photo.

I just spent an inspiring (and I don't use that word lightly) week end at Body, Mind, Spirit, 2010: National Conference for Young Women Living with Breast Cancer.

My best parts:

A Friday afternoon workshop: "Take charge of Your Treatment for Women with Metastatic Breast Cancer" with Dr. Maureen Trudeau. Engaging, accessible, interesting, informative and hopeful.

A Saturday afternoon workshop: "Intimacy after Cancer: Rekindling the Flame" with Dr. Sally Kydd. Amusing, motivating, reassuring, helpful and just plain fun.

A Sunday morning workshop: "Living with Metastatic Breast Cancer. Support that Works" with Dr. Tzeporah Cohen. Emotional,moving, cathartic, uniting, strengthening.

Speakers who resonated: Deborah Dubenofsky (Ontario Region Board Chair, Canadian Breast Cancer Foundation) and Carol Ann Cole.

My takeaway message (from Dr. Natasha Zajmalowski, Dr. Rob Rutledge, Dr. Roanne Segal and others)-

When it comes to breast cancer recurrence, it appears that insulin is the root of all evil. Lowering insulin levels improves the odds for a long and healthy life. How to do this:

1. Get at least thirty-five minutes of moderate exercise every day. Hooray! Something I'm already doing right!

2. Maintain a healthy body weight. This has provided the kick in the pants to re-commit to dropping 44lbs by my 44th birthday. Weighing too little isn't good either but that's never been my problem.

3. Eliminate or reduce alcohol and sugar. The insulin explanation is the first one I've understood and accepted re the link between these yummy things and cancer recurrence. To be truthful, not being an "all or nothing" kind of person, I don't see myself promising to never consume booze or sweets again. I can't even say that I haven't partaken since the conference, this being the season of Hallowe'en and pumpkin ale. I can say that I will make a greater effort to hold out for the good stuff and not give in to cravings.

I'm happy to say that although this message was consistent, the speakers seemed to be devoid of judgment. No one was blaming the victim or telling cancer patients that they brought the cancer on themselves.

I still feel that there are greater environmental and medical issues that need to be addressed. But there are just so few things we can control as cancer patients that I appreciate straightforward advice and simple things I can do to increase my odds of being around to see my children grow up.

Thank you so much to the staff (especially Jenn McNeill of the CBCN) and volunteers (especially Andrew, a volunteer from Humber college who helped with my books, kept me company and was enormously supportive during and after my book signing) at the Canadian Breast Cancer Network and the Canadian Breast Cancer Foundation for helping me to promote Not Done Yet, and especially for organizing an amazing conference.

Can we do it again next year, please?

Hallowe'en re-cap

A few days before Hallowe'en, parents received an email stating that, while dressing up on October 31st was encouraged, costumes could not include "weapons or blood." This was Daniel's quick solution.

Apparently, everyone at the school was fine.

Every Hallowe'en at our house begins with carving.

Our pumpkin wore a knight's helmet, to complement the evening's costume.

Don't let the serious face fool you. He was thrilled.

And I got to bemoan the fact that I had my child's "blood on my hands."

Even Lucy got in on the fun, albeit reluctantly.

And the biggest news of all? 

sugar hangover

Lots to tell about the conference I just attended but I'm exhausted and it's not just the result of all the sugar that was consumed in our house last night.

Instead of words, I give you some of the coolest kids in the world:



How often does one see a lady bug hanging out with Captain Kirk and the Grim Reaper? Death himself is my adorable offspring. The little trekkie and the bug are his very brave friends.




12 year old S. opted not to go trick or treating for the first time this year. Instead, he and his dad went to an early viewing off a movie that's usually shown at midnight. He's a character from that movie. Can you guess who he is? Those who've been privy to the discussion on Facebook are not allowed to vote!

chemotherapy and the H1N1 vaccine

As someone in ongoing chemotherapy, I have a compromised immune system. This puts me at increased risk for contracting H1N1.

I am among the priority groups established by the City of Ottawa, as is my family, and were it not for the hours long lineups (several centres closed the lineups by late afternoon), I would have had my shot yesterday.

I did call the oncologist yesterday to ask about interactions between Neupogen (the drug I take after chemo to boost my white blood cell count and fight infection). When I didn't hear back immediately I checked with the cancer centre receptionist who, told me (after checking with someone) that I should go ahead and get the shot.

Today, the nurse who works with my oncologist called and told me to wait.

The reasoning goes as follows:

Chemotherapy suppresses the immune system.

The flu shot is meant to boost it.

Having the H1N1 shot (or any other flu vaccine) too close to chemotherapy lessens the effectiveness of the shot.

Those of us getting chemo are instructed to wait to the end of the chemo cycle, get our bloodwork done (to ensure that our counts are high enough) and then get the shot the day before the next round of chemo.

This means that I will be waiting until November 10 for my H1N1 vaccine.

And washing my hands. A lot.

what i would miss

I just did an interesting writing prompt from Old Friend From Far Away by Natalie Goldberg:

"Tell me what you will miss when you die."

The instructions were to write for ten minutes without censoring yourself. Here's what I wrote:

My kids

My spouse

My family

My friends

My dog

Beautiful fall days

Walks along the canal with my dog

Getting lost in a book

Taking a nap on a cold afternoon

Knitting with friends

The feeling of euphoria when I write something good

Music

Good food

Laughing

Wondering at art

A hot bath after exercise

Physical intimacy (all kinds)

The happy feeling when I unexpectedly run into someone I like

Learning new things

Aha! moments

Seeing people do good things

Being proud of my children

Noisy gatherings around my dining room table

Doing fun things for the first time

Doing familiar things that make me happy

Connecting creatively or intellectually

Making new friends

Having old friends and family members who 'get' me

Scrabble

Fresh starts

Clean sheets

Small kindnesses

Spectacular acts of bravery

Feeling proud of myself

The way the pavement smells after a summer rain

The possibility of tomorrow

What about you?

milestone reviewed

I am featured on a blog called "Women at Forty" today.

When I was aked to submit a post, I thought it would be appropriate to re-visit a post I wrote on the eve of my fortieth birthday.

I'm looking forward to writing my fiftieth birthday post. Only eight more years and countless clean scans to go.