update: stable

I have now had 17 intrathecal (injected into my brain) treatments of the Herceptin. I'm getting used to it.

I had an brain MRI on September 15.

It showed all visible tumours to be stable. There were no new visible tumours. As I said, in an email to family:

"The brain MRI shows things to be stable. This is so much better than the alternative that we celebrated with gelato and a meal out.

It would have been nice to see some progress but this is still good. What's difficult to know is if I am just staying stable right now on my own or if the treatment is working. What is certain is that we will not be stopping for a little while - even if it is a grind, we have to assume that it's helping. Things are certainly not nearly as bad after 14 treatments as they could be by now."

The oncologist treating me said that it's likely that I am stable because of some treatment but we don't know if that's the Herceptin or the CyberKnife radiation I had in March. I do wish it were more obvious but I am happy to be here and to be feeling OK, all things considered.

I also had a spinal MRI on September 16. The report clearly stated that there was no visible sign of metastasis in my spine. This is good news. I'm still in a lot of pain but I don't need to worry that its caused by a new tumour.

"I have degenerative disc disease (which is a misnomer because it is not a disease and not bound to get worse). I will not hurt it by walking through pain or swimming. I'm going to see a physiotherapist and I have acquired a stability ball. My back pain has been a serious impediment to my quality of life so I want to make it better."

I also have neuropathy in my right foot and a lot of discomfort from headaches and all the weight I have gained. I miss my old body and the things it could do. I haven't given up hope that I will get some of that back but it's frustrating. 

On the other hand, I feel lighter these days. I spent much of the summer feeling like I was about to die and just waiting for the other shoe to drop. Nothing has changed really except that I seem to have decided to enjoy living. It's so much easier to exist this way.

At one of my treatments this summer, Tim said to me "I feel an obligation to have more fun." It's an odd way to put things but I really got it. We have, since that day, put in a concerted effort to have a better time. And I think we've been doing a pretty good job.

update on the fly

I am finally feeling like myself again. I realized that today, in fact, despite the fact that I have a cold, gifted to me by my children.

Since I last wrote, I had a wonderful week in Florida. I then attended my son's Grade 6 "leaving ceremony" and had treatment.

Today was spent attempting to get ready for a little family vacation. There is so much catching up to do that it seems a little silly to be going away but it will be good for us.

The neurosurgeon says all is well. No heavy lifting or dyeing my hair for three months. My head still hurts enough to need Tylenol a couple of times a day. I have an MRI at the end of August.

I rode my bike to an appointment this week. It was just four minutes away but I forgot my lock so I had to come and go twice. It felt really good.

This week will involve some long walks. Maybe I'll even start running again. 

I need to talk to my oncologist about what might come next. I need to stop worrying about what might come next.

I need to enjoy the normal.

for tim

In 1991, Tim and I, newly in love, had just moved to Toronto. Very soon after, he left on a pre-planned trip to the West Coast of the US and Canada. When we were re-united three months later (an eternity when you are 24), I had my own home, my own friends, job and way of doing things.

We were still madly in love. We joined up some things but continued to lead our own lives with separate interests and friendships in addition to the ones we hold together. This is why it struck us both as so very funny when, on our wedding night in 1996, after all the madness was over, I got quite drunk on all the left-over free wine (our guests were not big drinkers; my friends and I got pretty plastered).

I remember sitting in the stairs at the Arts and Letters Club, in my boots and party dress, head in my hands and saying to Tim, "You do the thinking for both of us."

We both knew I meant pay the bar-tenders and the venue but to say it on my wedding night, after all that had come before, struck us both as highly amusing.

Flash forward 24 years, through an unbelievable amount of change and trials we could never had imagined. When I awoke from 9 hours of surgery, the very first words out of my mouth were "Where is my husband? I want my husband!" - and I would not shut up until they let him come to me.

With all the drugs in my system, the very first and only thing I wanted was this one man. There will always be so much more to both of us together and on our own but that I would say those words when I woke were pretty damn definitive.

Poor Tim. He's stuck with me.

how much to say and how to say it: the blogger's dilemma

I'm finding my blogging constrained these days by thoughts of how others, particularly my family, are feeling. I'm especially concerned that my children could be reading, if they chose to do so. How could I possibly put my very darkest thoughts here, as well as my most hopeful, happiest, meanest and angriest, knowing that they could read these words and not understand that how I feel in one moment is not how I feel all the time?

Do I protect them or do I just be honest and know that those closest to me have the real me to talk to and reassure with my presence? Does silence actually protect anyone?

It's hard, even in the most banal of times, not to feel self-conscious - something that definitely hampers writing.

I feel a need to write but also a need to be read. I've considered password protection of my posts but that feels like locking people out when I want to be accessible. I don't even have much security on my Facebook profile because I think gives a false sense of security. I prefer to only post to the internet things that I'd be comfortable with the whole world reading. I can write, edit and even delete before posting. I am in control.

Or perhaps not. How can I know who reads and how they are affected? Are my thoughts embarrassing or even wounding to those I love? Months of silence on the blog have not meant that there has been anything wrong, just a lack of inspiration brought on by ennui and the self-imposed imposed limitations that have grown with the years.

My oldest son, who is beautiful, brilliant, funny and talented is a pretty private guy so I don't often write about him here. I have lots I could say but I respect his boundaries and don't share about him without his permission.

My youngest is more outgoing and happy for me to post photos and discuss our adventures. He's almost 12 though, so I know that door could soon be closing.

I've always considered writing about myself and my fears and foibles to be fair game. But perhaps it's not. At any rate, I'm conflicted. We'll see how it all shakes out in the coming weeks and months.

I have kept a journal for years. It's where I purge everything and I seldom feel a need to go back and re-read my words once a notebook is finished. One afternoon this winter, I threw a bunch of these journals into the fire and watched them burn. It felt very cathartic but created an awful lot of ashes. I think I'll just gather up the rest when I'm ready and throw them out with the re-cycling (I'll do it on pick up day, so no one actually has the chance to try and decipher my writing).

This blog, however, is permanent. I do know a woman whose family deleted her blog after she died but that felt really wrong to me. I want my words to live on but hat very thought makes each word weigh more heavily.

how far i've come

On Tuesday night, I had the privilege to participate in Blog Out Loud Ottawa. This was my third time attending and my first as a reader. I was very nervous.

But it was a wonderful experience. Tim and Sacha (my teenage son) attended as well as several supportive friends (I hope they realize how buoyed I was by their presence). My reading went very well. The crowd was so supportive that they made it easy. It certainly sounded better to me than it ever did in practice.

If you're a blogger and you ever get the chance to read in front of a supportive group - do it!

I read a post called "learning to breathe'" that resonated with a lot of people when I first posted it. It was written last November, a year after my brain surgery. As I said at the beginning of my reading, "...each blog post is a snapshot of my life at the time of writing. If I were to take a snapshot today, it would show how far I've come."

I am more open.

I am more resilient.

I am more willing to face my anxiety.

I am more hopeful.

I am less afraid.

It's a really good feeling to aware of this progress. 

My blogging over the last year has been pretty sporadic. And I'm not sure what the future holds. But I know I want to keep writing. And sharing.

I am so grateful to BOLO organizer Lynn Jatania, to Ottawa's blogging community and to the Writers Festival for the renewed inspiration.

Stay tuned. I'm pretty sure more change lies ahead.

Upate: BOLO has posted links to all the posts from Tuesday night. And look! That's me on stage in my red dress.

it's tonight!

of high tech and low humour

I just learned that my most recent brain MRI is clear. I'm feeling greatly relieved. It's not that I have any symptoms (although who doesn't get headaches?) but the long wait for results (10 days, when it usually takes less than a week) had me worried.

And then there's the fact that Herceptin doesn't cross the brain blood barrier. 

But for now, all is well and I can worry a little less for another three months.

The nurse did ask me if I have had a sinus infection. She said they mentioned it in the MRI report. That's some pretty high tech diagnostics.

Also, Tim wants me to make sure and include his joke: "They scanned your brain and they didn't find anything."

i want more

We've all been sick, these last couple of weeks. It seems that as soon as one virus leaves, another sweeps through. Or perhaps it's all the same bug. At the moment, I have a sinus infection that used to be a cold and my 10 year old has a fever that used to be an ear infection. We've been through a lot of facial tissue (my father worked for a subsidiary of Scott when I was a child. I try hard not to call them Kleenex).

I think that ill health is likely why the only resolution I've come up with is to check all our pockets before loading the washing machine. Raging head colds don't lend themselves to introspection.

But I have been thinking a lot about the kind of life I'd like to be leading and of the kind of change that's within my control. What it comes down to is that I want more. Not more stuff or more obligation, pressure, failure or shame. I want more love, more play, more laughter, music and creativity.

The tricky part is getting there. There are things I need to do to have more of what's good but I have to make sure I don't fall prey to what's bad. Exercise is great for me but instead of beating myself up for not racking up the minutes I've set as an arbitrary goal, I can go for a walk. Writing feeds my soul. Except when I'm stuck. Then, I can pick up my journal. Or my knitting. And if I get sucked down the rabbit hole that is the internet, well that's OK too. I can always do things differently tomorrow.

I think I'm trying to say that there is a corrollary to "I want more" and that's "Be nice to yourself." So I guess those are my resolutions for 2014. It hope it still makes sense when the cold dope wears off.




It was only after I'd drafted this post that I remembered that Lynn Miles said it before me and best.

This song is from the album "Downpour." I've bought it 5 times so far and you should too.

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? 

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.

constant correction

"Balance is a process of constant correction."
-Guy Forsythe, "Balance" from the Freedom to Fail

Terry Arnold (@talkIBC) reminded me of the Guy Forsythe song last night during a weekly Twitter discussion of the Breast Cancer Social Media group (#bcsm) on Twitter. These chats happen every Monday evening but the conversation is ongoing. I often forget about the chats but when I remember (or, more often, am accidentally reminded), I love every moment. When I start to chastise myself for spending too much time online, I am reminded of  how much support I find there - across distance and difference. We "get" each other.

One of the threads last night was about seeking balance, a subject near and dear to the hearts of many of us but especially to those who are recovering from or living with chronic illness. When is it right to push ourselves and when is it best to slow down?

Feisty Blue Gecko shared a post about "Seeking Balance" that deeply resonated with me, as I try work my way through my September to-do list, without forgetting to notice all the good (and not so good) happening around me.

It was a great discussion as always but it wasn't until this afternoon that I took the time to follow the link Terry posted and listen to Guy and some of his band, singing "Balance."

I was reminded that I literally stumbled into the audience listening to Guy at last year's Ottawa Folk Festival, on my way to another stage. I was immediately mesmerized and didn't leave until the concert was over.

It was pouring rain when Guy began what has become one of my favourite songs. As he sang the words from the chorus, "You can't change the world and you can't change the weather, the best you can do is make the most of today", the sun came out. It was a perfect moment as I stood there, acutely aware of my beautiful life.

Tomorrow, my mother is coming for a visit. I need to get to the cancer centre lab to get bloodwork done this week. Thursday is parent-teacher night at both my kids's schools. On Friday, I go to Halifax for a few days (starting with the Advocacy Training, hosted and organized by the Canadian Breast Cancer Network). I get back Monday night and have a surgical procedure to replace my portacath the next morning and Herceptin treatment that afternoon. The day after that, I need to organize the milk orders that have come in at my son's elementary school. That Friday, the home care nurse will come and remove the needle from my new portacath (they leave it in for a few days) and I'll head to Toronto. We'll spend a day getting ready then, I'll head to my friend's cottage in Northern Ontario.

That's just my September.

And that list doesn't even include the banal things from my to-do list that need to get done in between each of these things. Or doing the things that keep me whole, healthy and sane.

Some things just aren't going to get done. Others won't be done as thoroughly as I'd like. I'll try not to think of it as dropping the balls, just allowing them to fall, gently. Someone else can pick them back up or I'll deal with them later.

So much of what's happening in the next little while will be memorable and enjoyable. I need to remember to breathe deeply, look around me and take it all in. I have a feeling there are a few more perfect moments coming. It would be a shame if I missed them because I was too distracted or too worn out to really be there when they happen.




 You can order the Freedom to Fail from Guy Forsythe. I bought it last year at the Folk Festival. It's one of my favourites. I think I'm going to go listen to it now.

a man, a boat and some respite

I was listening to the radio this morning and I heard an interview with a man who was sitting in a boat outside his flooded home in Calgary, fishing. He said that his furnace, freezer, everything in his basement and much of his first floor were submerged in water but he was making the best of it.

"People pay thousands of dollars to do what I'm doing. How often do the fish come to you?" he asked the interviewer. "I can sit and be miserable or hang out like this and keep a smile on my face for a couple of days."

I was quite taken aback with this interview. At first, it seemed like an incomprehensible attitude to have in the face of such tragedy. But as I thought about it, I realized that not only do I understand, I can relate.

I don't actually believe that the guy has been sitting in his boat and smiling for the last few days, or that he's immune in the face of loss. He's just found something, in spite of all that's happening, that makes him happy. No matter what is going on in any of our lives, there is hopefully at least one good thing that we can cling to like a life-raft, something that brings respite while we gather our strength to face all that lies ahead.

I would never choose to have been diagnosed with cancer. I would never wish what I've been through on anyone. But there have been so very many good things - the friends and loved ones who've rallied around, things I've learned about myself and a new appreciation for all the good things - that have sustained me through the darkest times.

I hope it goes without saying that I don't think everything happens for a reason. The floods in Alberta have been horrific and terrifying. This is a tragedy of enormous magnitude.

It's just that this morning I listened to that guy, fishing in his boat while his home was underwater and I felt that I understood him.

doors open - an excuse for frivolity

I have a long overdue post up at Frivolity (getfrivolous.com). We had such a good time at Doors Open Ottawa!

Daniel "driving" an OC Transpo bus.

brain slurry and eye candy

I seem to still be recovering from the weekend, with a brain full of mush. For those new readers I picked up after my post on Angelina Jolie - you might want to come back tomorrow.

Here's some of the random slurry from my brain:

Speaking of slurry, my 10 year old's baseball team voted on a name over the weekend. The results came in yesterday.

After one failed experiment, I made my own eye makeup remover yesterday. I don't wear makeup very often but when I do, I want something that will take it off without leaving me with more wrinkles and fewer eyelashes. My second try yielded great results - Burt's Bees baby wash, olive oil and water. It wasn't an original recipe or anything, I'm just thrilled that I was able to avoid buying a small, expensive bottle of something I was convinced I could make myself.

Finally, we had our Mothers' Day on Sunday (delayed because half the family was at the Toronto Comic Arts Festival last weekend). Pancakes and Star Trek Into Darkness were my two requests and they were happily fulfilled. The pancakes were delicious and the movie had Zachary Quinto, Simon Pegg and Benedict Cumberbatch. 
I loved every single second of Star Trek...

SPOILER ALERT!!

It was fun, fast-paced and had snappy dialogue and lots of nostalgia. Also did I mention Zachary Quinto, Simon Pegg and Benedict Cumberbatch? 
It wasn't until I got home that I started to brood about the fact that there don't seem to be any women running Starfleet. And the movie fails the Bechdel test.
At the time, I didn't even notice. I blame it on Quinto, Pegg and Cumberbatch.

i don't have a brain tumour

better than words

A few weeks ago, I took my bike in for its spring tune-up at my favourite bike shop. 

I love getting back on my bike again. I don't drive (which is a whole other story), so riding my bike gives me a sense of independence. Riding has always given me a feeling of freedom and on good days, I renew the euphoria of childhood as I make my way around the city on my own steam.

Also, it's a lot more efficient than riding the bus and really good for my physical and mental health. 

My bike is a tank, weighing in at 42lbs and very solid. I sit upright as I ride it and it feels tremendously safe. However, I managed to tip it over while riding a couple of times last year. This tune-up included a new bell and fenders because mine were broken and they fixed the built-in basket which had been bent out of shape when I fell.

As he was bringing me my bike, the mechanic - usually polite but terse - asked, "Do you have kids?"

Surprised, I answered in the affirmative. 

"Do you lend them your bike?"

"Um..no."

"Because it was pretty banged up. It's usually kids who do that."

I admitted sheepishly that I was the one who had fallen and done the damage. I was tempted to just leave it at that but added, "It turned out that I had a brain tumour that affected my balance. The tumour is gone now and my balance is OK."

Without missing beat, the guy lifted his hand into the air. We bumped fists. I smiled widely, paid my bill and rode home with a light heart.

Some people know exactly what to say - even when they don't use words.

10 years old

Dear Daniel,

Yesterday, you turned 10. In honour of this momentous event, I thought I would list just a few of the things I love about you:

You cherish being funny. Your humour ranges from the brilliantly witty to jokes that have a lot to do with farts.

You are sensitive and full of empathy.

You are fully awake from the moment you open your eyes, every day. Sometimes, you complete the sentence at dawn that you started before you fell asleep the night before.

You revel in making others smile. You take great pride in being "a nice guy."

You will make up silly walks the whole way to school.

Some mornings, you say "I'm awesome" or "I love being me." These words fill my heart to bursting with happiness.

You have your own sense of style and the confidence to be yourself.

Your enthusiasm for life and it's adventures is completely contagious. I enjoy almost everything more when I do it with you.

You are a voracious reader. You love words and language and you use them with great dexterity (if you don't know this word, you can go look it up).

You wear you heart on your sleeve. The people you care about know they are loved.

You make me happy every day of my life.

I love you to the edge of the universe and back, multiplied by infinity.

going to Gil's Hootenany on May Day. I plan to sing my heart out.

I have a new post up at Frivolity about how I'm going to sing my little heart out with a bunch of other people.

"Despite the fact that I've been told since I was young that I can't carry a tune, I love to be in the middle of a room of voices raised in song. It feels to me like being embraced. Usually, I start with mouthing the words and get braver as the event continues.This May Day, I'll sing right along with everyone else, in memory of a wonderful activist and lover of music. If you live in the Ottawa area, come join us at Gil's Hootenanny in singing "Songs of Protest and Hope" on May 1st."

You can read the rest of this post at getfrivolous.com.

musings on frivolity

"Sometimes we need to do something not because it’s good for us or because we ought to but because it’s fun. And because it will put a smile on our face and on the faces of people around us."

You can watch a great short video and read the rest of the post over at Frivolity.

diddly squat (the good kind)

As I mentioned in my last post, I had an MRI last Sunday.

I have subsequently had a really trying week (changing appointment times, having to negotiate and fix many bureaucratic issues with staff who don't know me, treatment and two dentist visits, culminating in a spectacularly messy and traumatic root canal) but I've a phone call from my oncologist that put it all in perspective.

Dr. G: "Guess what your MRI showed?"

Me: "Well, you probably wouldn't have put it like that if it had showed anything bad...So...It didn't show anything?"

Dr. G (sounding jubilant): "Nothing! No active disease, no residual disease just the effects of surgery."

Me: "So my brain is like my liver now. It looks like it's been through the wars but otherwise it's just fine?"

Dr. G: "That's right!"

Me: "And that's it?"

Dr. G: "Yup! Otherwise, it shows diddly squat." ( I believe that's the technical medical term)

I feel far more relieved and happy about this than I did when I had the CT. Not that I take the situation with Herceptin for granted but I do know that it has worked for me for more than 6 years. My brain, on the other hand, remains unprotected. From now on, I'll be experiencing every clean MRI as a gift.

Life is good. 

Bring on the root canals.