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.

love

photo: Mary Anne Register Folckomer

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.

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.

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.

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

wishing for a dreamless sleep

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.

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?

growing up

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.

around the table and around the world

Boy, am I dopey today.

We had our Thanksgiving dinner last night - turkey, mashed potatoes and stuffing (probably the best I have ever had) smothered in gravy. A beautiful salad with a basil and feta dressing. Lots of wine. And Guinness chocolate cake, pumpkin pie, whipped cream, ice cream and chocolate sauce for dessert (I don't think anybody actually had all of those things).

And a truly lovely group of people.

It was perfect.

Today, I am trying to make notes for a presentation I am giving on Thursday. I need to talk about my transformation from individual cancer patient to a member of a vibrant and supportive community.

I had lots of thoughts about this on the week end, when I really didn't have time to write them down. Today, my brain seems to have been replaced with mashed potatoes and gravy (Mmm. Leftovers).

It's an interesting question, though. My online community (which consists of folks I have met in real life and others I probably will only ever know online) has been a key source of information and support over the years.

So, help me out here. What role does your online community play in your life? How did you come to build these virtual relationships? Does the internet help sustain relationships with friends?

I'm not asking you to do my work for me (really, I swear). I'm just curious how you react to the words "network" and "community" and how they apply to your online life.

limits on multi-tasking (on not doing pelvic lifts while I brush my teeth)

You'd think that since I don't have a full-time job (or even a part-time one) and both my kids are in school that time management would be a breeze, yet I still find myself struggling to get things done.

Part of that is pure procrastination (it's a slippery slope from checking my email to reading 10 tabloid stories someone linked to on Facebook). 

Part of it is feeling overwhelmed (where to start on a large project? which project should I work on first?).

It's also that I have changed the way that I live my life. Before cancer, when I worked full time, it seemed that every minute needed to be spent in a productive way. I tore myself out of bed in the morning as though jolted by a starter pistol and collapsed back in long after I knew I was tired. I answered emails while watching TV, talked on the phone while I played with my kids, read over documents while I rode the bus. There were seldom any truly quiet moments.

Cancer pushed me off that treadmill. In some ways I miss it but in lots more ways I don't.

While I still keep lists obsessively, I try not to obsess over getting through them. And over the last few months I've begun to embrace the efficiency of doing one thing at a time and doing it to the best of my ability. I still have a long way to go.

Every time I read a newspaper online or leaf through a magazine, I am urged to multi-task in every possible way. "Give yourself a facial while you make dinner!" "Fold laundry while you return calls!" "Tighten your butt muscles while you brush your teeth!" It all feels exhausting to me.

I am very fortunate to have been given the gift of time. I'm working at making it work for me. I want to focus on playing the game, not worrying about whether I'm going to drop the ball.

i ran for the cure

photo: Ian Hendel

With my sister.

At the finish line.

Wearing my Songbird scarf.

And my hat from Texas.

Team NO PINK FOR PROFIT was 43 members strong. We raised a whopping $25,000.

Sometimes life is very sweet.

my good bad dog: a love story

She makes an excellent, if somewhat smelly pillow.

It's a good thing she's cute.

This is her Hallowe'en costume. It suits her.

She jumps up on visitors and gets into the garbage at least once a week. She ignores most commands, unless she feels like listening and she steals food off the table (one time a fresh baked lemon meringue pie), the moment you turn your back. She'd run into traffic, if she thought there were something interesting on the other side of the street. She hates to get her feet wet but will roll in the mud. She disappears the instant I have a brush in my hand.

But she comes when called (most of the time) and materializes from out of nowhere when I put on my shoes for a walk. She loves me exuberantly and unconditionally. To her, I will always be The Best and Most Important, even when I have lost confidence in myself. She is happy almost every moment of every day and she gets me out the door when I'm feeling unmotivated.

She has the sweetest temperament of any living being and I have watched a child pull her out of a hiding place by her tail, without a whimper or a growl. She'll sit in a lap like a toddler and will fall asleep in my arms, with her head on my shoulder. I call her my Hairy Little Girl and whole host of names too embarrassing to repeat in this space.

She's a balm on my bruised spirit and an undemanding, forgiving companion. She makes me smile and even laugh on the days my heart hurts the most. She reminds me to be happy, to let go of the little things and how much fun it is just to be alive.

She's formally called Amaia Fiesta Lucy Diamond. She's a very good bad dog.

just skip the anesthesia. he's tough.

My oldest son had his wisdom teeth out today. While I worried and waited, I got to thinking about managing his pain and remembering the aftermath of my brain surgery two years ago. I made a bunch of notes for a blog post about this and then thought to do a search of this blog. It turns out I wrote a post on exactly this subject almost a year ago. 

Sigh.

Can I blame these lapses in memory on the brain surgery or just on aging? Or stress?

My son's procedure went well and he is now very stoned and asleep in his room. To pay for all this we had to put 1800.00 on our credit card.

This is mind-boggling to me. Why is this not covered by public health care?I know the historical reason why (the first wave of Medicare was supposed to be followed by dental care and a Pharmacare program. That never happened.) but doesn't it cost the province much more to hospitalize someone whose wisdom teeth have become impacted?

Dental care is a real "don't get me started." Ask anyone who knows me.

Fortunately, my private insurance will cover most of the cost. However, it only covers part of the cost of anesthesia. What would have happened if we had been unwilling to pay the difference? Our 16 year old son would only have been partially anesthetized while they yanked out his wisdom teeth? 

This mystifies me.

And it's only a small taste of what we'd experience if we didn't have socialized medicine.

Gratuitous photo of my handsome son, with all wisdom teeth still in his mouth

CT results

"It's good news!" said the voice on the other end of the phone. She sounded ecstatic. When you are nurse working in oncology, relaying good news must come as a welcome change.

"You're kidding!" I exclaim. Then, "I don't know why I always say that."

She laughs. "Well, there is no change. It's stable."

Seriously, she sounded giddy. We giggled some more.

She said, "You have a wonderful week end." She really sounded like she meant it.

Suddenly, I'm in the mood to celebrate. I already have dinner plans. And I probably would have had a beer anyway (they have Beau's. How could I resist?).

Now, I may have two. But I doubt it. I will just enjoy the beer, the food and the company (six people I love), even more.

i do run on

The echocardiogram was fine, the doctor found nothing unusual when she examined me, my butt is sore today from all the biking, the technician got the vein on the first try before the ct scan, I will have results in about a week, I got to go on a great walk with my sister today, my kids and spouse have just left on a two night canoe trip and this evening, I am going out for a grown-up dinner.

Life. Is. Good.

new beginnings

September always feels like the beginning and I'm ready for a fresh start.

Taking the summer off has left me ready to write again. I have much to say and many stories to share.

In many ways, this blog is my anchor, holding me in place long enough to name my emotions, share my experiences and examine my actions. I'm feeling kind of "all over the place" these days. I think an anchor may be just what I need.

It's good to be back.

Daniel is ready for the first day of school.

happy new year!

Today is the first day of school in these parts. We all had mixed feelings about it. Summer went by way too fast for me and I think we all revelled in the things we did (a week at the cottage, an overnight in Montreal, a few days in New York) and the things we didn't (lots of sleeping in, watching movies, reading books and hanging out). I'm very conscious these days of how quickly time is passing.

Last year, I wrote a post called "new beginnings" and here I am again. For me (and I suspect for many people), the first day of school will always mark the new year, way more than that first day in January.

Daniel is in Grade 6.

Sacha is in Grade 11.

This is obviously not a first day of school photo. But that was never going to happen.

Summer is over.

It's time to get begin the new year.