speaks to me

Thank you xkcd.

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.

it gets better. and it can get better now, too.

Chances are very good that you've already heard of the It Gets Better Project, which was started in response to a series of suicides. Young people (some as young as 13 years old) are choosing to kill themselves rather than continue to deal with being bullied or shamed.

I love this powerful, touching and often funny series of videos aimed to give hope to young (and older) teens who are feeling depressed or alone because of their real or perceived sexual orientation.

This one from Pixar is the favourite in my house.




A day or two ago, The Maven shared this video on Facebook. These kids are saying that things need to get better now, not just in the future. It's brilliant and I am in awe.

Reteaching Gender and Sexuality from PUT THIS ON THE MAP on Vimeo.

and then my hair got did (final makeover post, i promise)

Of the four women being made over, two of us picked our clothes and shoes in the morning and then had our hair done after lunch. I was grateful to be in the afternoon group and have someone else do the work for a couple of hours.





Actually, I did have to do a bit of work. It took concentration to separate those little papers.





You can't really see all of them, but there are THREE little bowls of colout being applied to my head.





This is my favourite part.











And this is why my hair will never again look the way it did when Tony was finished with it. How does anyone do the back of their own head like that?







Thanks so much to Tony from L'Elégance Salon (they don't have a web site or I'd provide a link), the St. Laurent Centre and the Ottawa Regional Cancer Foundation for making all of this possible.



(All photos by S. Sioufi except the last which was provided by T. Vincent)

and then it got easier

It's not that I don't have anything else to talk about. It's just that life has been really, really busy lately and when I finally get the time to blog, my brain is no longer working.

I thought I'd continue sharing my makeover photo-story with you. Please feel free to move right along if you're bored with this stuff. Let me know in the comments if you've read anything interesting lately.

Meanwhile, the shoe store was more fun than the changing room:

First I had to pretend to be shopping for shoes, so that A Channel could get some footage.

Check out the heels on these babies.


I threw on this dress so that I could be filmed without ruining the surprise. It hadn't even been among the outfits that I considered but I loved it so much that I thought about changing my mind. Or going back a few days later and buying it. But seriously - where would I wear a second fancy outfit? To the dog park? Buying groceries? To parent-teacher interviews?


Can you tell which shoes I came in with?


It just occurred to me that the ones I chose (#53) look a bit like my old Blundstones mated with the those sexy pumps I looked at when I was still wearing the diva dress. Little boots but with a ridiculous heel.

See that crazy grin on my face? I love shopping for shoes.


Here's a better view of the whole ensemble. The St. Laurent Centre even paid to have my top altered. The outfit is hanging in my closet. I may just decide that I will wear it to the dog park.

i don't understand

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?

chronological order

Arrived at the St. Laurent Centre with my friend SS, met the other women and realized that I was going to have an exciting day.


I was impressed with Tony from L'Elegance. He was consultative but had a pretty clear idea of what he wanted to do.


Trying on clothes was hard work. I don't have photos of some of the real duds or I would share (really I would). Finding items that fit and looked good was a real challenge and there were moments when I felt extremely frustrated. There were lots of great helpers, though.


I was determined to be open-minded but this was just too much sparkly for me. I felt like I was wearing a very shiny washboard.

call me George-Michael

We've posted a short clip on Frivolity. In this one Andrea and I talk about overcoming our  obstacles, trying new things, taking bold steps and learning how to have fun.

There is also an Arrested Development analogy or two.

new post at Frivolity!

I have a new post up on grabbing the moment over at Frivolity, called walking the talk:

On Sunday night, my spouse asked me to join him and my youngest son in front of the fire. I passed (my exact words were “Who’s going to do the dishes?”)

A few minutes later, I heard my 9 year old’s voice from the living room. Suddenly, I was very aware of the irony that I had just launched a site about doing what makes you happy. Really, what did it matter if the dishes stayed dirty? The dishes in my house are always dirty.

You can read more at and check out our new site and podcast at getfrivolous.com.

watch and listen: i get tattoed

The most recent episode of "Get Frivolous" is up over at Frivolity, the site of my new project with Andrea Ross.

This is the one in which I get my new tattoo. You can listen in before, during and after. Watch the video (Andrea put together a slide-show with photos taken by my friend Helen Berry) and/or listen to the audio on it's own.

It takes less than twenty minutes and it's good fun - if I do say so myself!

crapshoot

Last week, Tim and I met with my new radiation oncologist. Dr. C is a walking talking Gallic stereotype, with a rumpled white coat and a turned up collar. He was full of sighs, snorts, "Boff!"s and very eloquent shrugs. Both Tim and I observed that the only thing missing was a Gauloise emerging from between his lips.

Not my radiation oncologist. This is the French actor Gerard Depardieu, to whom Dr. C. bears a remarkable ressemblance. (photo IMDB)

After asking how it was that my tumour had been found (he was surprised that I had asked for the MRI), Dr. C shocked us by putting three options on the table:

Whole brain radiation (which he noted is still the standard treatment for brain tumours in most of the country).

Surgery (which is possible because my tumour is on the surface of the cerebellum).

Cyber Knife radiation treatment (which is the only option we were expecting).

Dr. C offered no advice as to which we should choose. He told tell us that there are no clinical trials and no longitudinal studies to guide us because most patients with brain tumours don't live enough to be studied longitudinally. On the other hand, it's really unusual for a patient to have only one small tumour.

The size and singularity of my tumour are very positive things but they make it really hard to base my decision on anyone else's experience. For example, whole brain radiation (WBR) "treats the whole brain" (as Dr. C helpfully pointed out when I asked him the advantage to that treatment). The rates of overall recurrence are lower with WBR. However, the treatment also causes permanent alopecia and can cause permanent cognitive damage. It seems to me that it's a bit like taking a sledgehammer to hit a single nail - you end up needlessly damaging the plaster.

I've decided that WBR is off the table for now (keeping it as an option to treat future tumours).

With surgery it might be possible to clearly cut out the tumour. However, it's still surgery with all it's risks, pain and side effects. 

Cyber Knife has very few side effects (in the words of Dr. C "almost nil."). There is a risk of necrotic (dead) tissue needing to be removed surgically in a few months' time.

Dr. C wasn't condescending or impatient just painfully honest. I am once again navigating the land of the cancer unknown. Perhaps the surgeon to whom I'm being referred will have some insight.

To recap:

WBR is the standard treatment and may prevent future recurrences. However, I have no indication that there is another tumour developing soon and WBR comes with some nasty, permanent side effects.

Surgical techniques are being refined all the time. A surgeon may be able to more clearly extricate the tumour. However, I do not relish having my skull cut open and the subsequent pain and recovery time.

Cyber Knife is reported to be as effective as surgery, painless and with few side effects. On the other hand, some of those reporting this are the owners of the company. I don't relish the possibility of necrotic tissue but I do love the idea of walking away after a 40 minute session.

I kind of wish I had a three sided coin. Or a crystal ball. And then there is this guy in Italy with a brain tumour who hacked his medical records, posted them online and got advice from all over the world.

I wish I knew how to do that.

Meanwhile, I have a CT scan and Cyber Knife mask fitting on November 9th, an MRI on November 11th, a consultation with a surgeon on November 13th. I have a Cyber Knife appointment booked for November 23rd, in case that's the route I choose to travel. All these dates have been booked in the last couple of days. I still don't know what I'm going to do but it feels good to be moving forward.

contested irrelevance

I'm going to be quoting this brilliant speech given by my friend Andrea today (I'm doing a talk at Carleton University) and I realized that I have never shared it with you here, even though I found it to be deeply inspiring.

Please watch, and go and leave a comment over at We Can Rebuild Her so that Andrea can know the relevance and resonance of her words. It's a welcome reminder that nothing we do to effect positive change in this world is ever irrelevant.



This talk got a standing ovation at PAB 2010. I've watched it several times and it still gives me shivers.

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

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

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.

"let's hear it for November!"

I get really (and somewhat irrationally) nervous at this time of year. 

I found the lump in my breast on December 2, 2005.

I was diagnosed with liver metastasis on November 24, 2006.

And last November, was all about trying to decide what to do with my brain tumour. I had surgery on November 27.

This is not my favourite time of year.

But Katherine O'Brien left a comment in yesterday's post and linked to this new video that she made. One very good reason to embrace November is that it's no longer Pinktober!

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

ebook!

Not Done Yet is now available as an ebook on Kobo (other e-retailers to follow). 

I still have lots of hard copies to sell but this is cheaper for you and no shipping!

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?

back at it

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.

the raven and the sun II

photo: Helen Berry

I think it's appropriate that, at this stage of my life, I should re-affirm my love of the raven myth.