Tuesday, June 30, 2009

recipe for low-tech fun


1. Take down kids' playhouse that has been up for almost a decade.

2. Leave dogs unsupervised in back yard.

3. Set two six year old boys up with sprinkler and water slide.

4. Leave six year old boys unsupervised for two minutes.

5. Find small lake filling hole previously dug by dogs.

6. Consider becoming annoyed but remember how much fun you had playing in the mud as a kid.

7. Sit and knit while boys dip their hands in the water.

8. Watch as boys wade into mud hole.

9. Listen to imagination game as boys run mud through their fingers.

10. Observe the inevitability of mud in fingers leading to mud covering bodies and faces.

11. Intervene only when mud is being flung against the house.

12. Watch boys rinse mud off house.

13. Interrupt game only when it is time to leave.

14. Ignore pleas for five more minutes.

15. Hose boys down.

16. Drop one boy off at home.

17. Apologize for mud encrusted in ears and other places.

18. Smile every time you think of those two boys covered in mud.


Sunday, June 21, 2009

the best

Big promises.

High Expectations.

Met.

And exceeded.

So much more lies ahead.

I am privileged to share this path

With you.

Happy Fathers' Day.

Saturday, June 20, 2009

my new rack


Warning: This post may contain too much information for some readers.


I have not worn a prosthesis for more than two years. Lymphedema and then scarring from radiation made the experience of wearing it excruciating. The last time I tried to wear it, I was on a date with my spouse in Florida. After an hour, I was in tears, it hurt so much.

Out it came and I haven't looked back.

At least not much.

I find that I'm pretty comfortable without a prosthesis. Sometimes I dress to camouflage and others I just don't care. And most of the time, I don't think about it at all.

Lately, though, I've wanted the chance to blend in a little more, to not have to lead with my cancer when I meet people. And although I have some great tops that work with my asymmetrical body, (from Rhea Belle, of course) I do get tired of the limited options open to me (it's hard enough finding funky clothes in larger sizes).

So, while feeling slightly guilty about giving into societal notions of beauty (in hiding my asymmetry, am I implying that I think there is something wrong with it?), I set out to visit Kelly's Mastectomy Boutique.

The entire operation took all of ten minutes ("Oh look! Boobs!" I exclaimed as I tried on prosthesis and bra) and cost several hundreds of dollars (recuperable, thanks to the government and my insurance plan. I wonder though, why do we need a referral from a doctor? Does anyone get a prosthesis for fun? What would they do with it?). I brought it home, stuck it in my closet and didn't wear it for almost a week.

Yesterday, I decided it was time for the prosthetic equivalent of a test drive. I was meeting Sassymonkey for pints and knitting on a sunny patio. It seemed like a low stakes endeavour, in that if I arrived with my boobs pointing in different directions, Sassymonkey was likely to be unperturbed. It was also a good opportunity to put the boob through it's paces, as I would be biking, knitting, eating, sitting in the warm sun and engaging in a social encounter.

My new fake boob is squishier in back and is supposed to be lighter - better for both my uneven chest wall and lymphedema. I wore it under a t-shirt with a picture on it (much harder to wear with an uneven chest) and one that is slightly snugger than I have been wearing lately. I noticed immediately that my waist, gone for ages, seemed to reappear. I also noticed that my posture seemed to improve.

I ran into someone I knew on my way to the pub. She said, "You look different. Have you done something to your hair?"

And after Sassymonkey and I had been sitting for a while, I pointed out my newly symmetrical rack to her. "That's what's different!" she exclaimed.

"You'd tell me if I were unbalanced right?" She assure me that she would (I felt unbalanced, I'm so unused to having this weird mound on the right side of my chest).

All in all, I declare the outing a success. The thing felt odd but there was no pain. I even forgot I was wearing it for a while.

When Sassymonkey and I parted we hugged goodbye (I later repeated this experience with T. Hugging feels very odd, like we are squishing a big pillow between us) and she noted, "You're still balanced."

I said I was glad but that I was going to take it off when I got home. "It's like breaking in a pair of shoes, you know?"

She said that she did.

As I type this, the stand-in for my right boob is nestled in it's box in my closet. I am toying with taking it out for a spin again this evening.

And one last thing: there needs to be more support and encouragement of women who create clothing for the post-mastectomy body. Also, it would be great if the bigger clothing companies would come across, by supporting the work of women like Jacqueline and modifying their own designs. I can't be the only woman who has had a mastectomy, does not love prosthesis and cannot/would not choose surgical reconstruction.



Thursday, June 18, 2009

you can't always get it


Mixed results from my appointment with my oncologist yesterday.


First of all, I was late. As I was riding to the hospital, I noticed that it was getting harder and harder to pedal. When it actually became impossible, I got off the bike and checked. My front brake was squeezing the front wheel. Hard. I think I had been riding like this for some time - and tightening every time I braked. I just thought I was tired and out of biking shape. I solved the problem by releasing the front brake entirely (I'm sure that's not the safest thing). This meant that when I hit the big hill before the hospital, I was already wiped out from pedalling with all that friction.

I arrived at the cancer centre twenty minutes late and a hot, red, sweaty mess.

When I finally saw my doc, he easily agreed to a break in July (which is a good thing because I have non-refundable air tickets and a pre-paid hotel for BlogHer). That went so well that I (without making eye contact) asked for August off as well.

The answer was an unequivocal "No."

I didn't argue with him and I listened patiently as he reminded me that I need to think in terms of a chronic illness that we need to keep treating. I can't really take a (longer) break because we need to keep managing the illness.

I told him that I understood. That I know that the treatment I am on is our first line of defence and that the longer I stay on it, the more chance there is for the second, third, fourth and fifth lines of defence to be developed and improved.

He said, "Well, that makes me feel better. When I saw the note in your chart [that I wanted to ask for two months off], I got a little worried."

I reassured him that I am not planning to bail on treatment, I'm just feeling ground down and fed up.

Dr. G. also reminded me that, "Although, it's great that you have remained with no evidence of disease for so long, there is likely cancer somewhere in your body. Statistically, there is something there." But then he added, "But we don't know enough about Herceptin in the long term. Maybe you're cured. We just can't know."

"Cured." Nice word, that.

And I get it. I really do. And I know that while I was incredibly unlucky to end up with metastatic breast cancer (especially in the liver), I have been fabulously, gloriously fortunate to end up in remission. I know so many other wonderful women (Jeanne and Rebecca, for example) who have had to move to regimens that are harder to tolerate.

I can accept the fact that I will be in treatment for the rest of my life, with only very short and very occasional breaks. I can even make the best of it. And I can feel pretty positive most of the time. I think I am also allowed to get pissed off every once in a while.

On another note, my spouse wants you all to know that the Xmas tree in my back yard is "next winter's firewood." It hasn't been chopped, though. Maybe we are going to have a bonfire in my living room.


Wednesday, June 17, 2009

the brain of a monkey


First:


My spouse and I had the following conversation this morning:


T.: "I had a really hard time falling asleep last night."


Me: "Did you have monkey brain?"

T: "What? Like I couldn't stop thinking about bananas?"


Second:


I woke up feeling kind of bummed out this morning. After coffee, my mood changed dramatically. I actually tweeted, "I think I love coffee the most."

Third:


Speaking of Twitter, a bunch of folks have
changed their time zone to Tehran, in order to confuse Iranian censors. I've done it, too, although I am not sure if this really works. And I love the fact Twitter and Facebook are playing a role in helping activists all over the world get the word out. Makes me feel virtuous and less like I am just wasting time (although, I know it's a stretch to describe playing a Scrabble knock-off and commenting on my friends' status updates as activism).

Fourth:


Just over one week of school left. Double-edged sword, that. S. has had a fantastic teacher this year. Can't say the same of D. His teacher was complaining that he does his own thing too much, like reading a book by himself during story time. Um, perhaps this is because he is READING NOVELS while she is teaching the kids what sound the letter 'a' makes. Sigh.


Next year, he is switching schools and entering the "gifted" program (this term is a "don't get me started." Both my kids have tested as "profoundly gifted." My friend M. says we should just call these kids "idiosyncratic learners." Another terrific teacher once said, "It's just another kind of spec. ed." These kids have their own set of learning challenges and my older son is thriving in the program). It will be great to have the kids in the same school.


Fifth:

My older son has been asking for guitar lessons for a shamefully long time (shameful because music is an area of my kids' education that we have sorely neglected). I just signed him up for
Rock School. If he enjoys the week, we will sign him up for lessons.

Sixth:


I have never set foot in an Abercrombie and Fitch. The fact that
this beautiful young woman was relegated to the stockroom because she has a prosthetic arm has ensured that I never will.

Seventh
:

My Xmas tree is still in my back yard. I think that's kind of sad.


Eighth:


I am seeing my oncologist in person for the first time in months, this afternoon. I plan to give him a copy of my book and remind him that we discussed taking a break this summer. I plan to skip treatment in July (so I can go to BlogHer).
I also want to ask him if I can take August off as well. If he has any hesitation about this at all, though. I won't push.

I promised.


Ninth:


Posting gratuitous photos of my son being goofy (future blackmail fodder for sure). Noticed that I look even goofier in that hat but decided that censorship on that basis would be hypocritical. Thanks to my bro-in-law for capturing the moment with his cell phone.





Tuesday, June 16, 2009

down and up and some parentheses


Well, hello there.

It's been quite the week.

On June, 10th, I woke up with a sore throat. I didn't take my temperature until early afternoon, by which time it became clear that I was running a fever. I called the nurse who works with my oncologist (I'm supposed to do this, since I have a suppressed immune system, thanks to chemotherapy) and was directed to go to the emergency room at the hospital connected to the cancer centre.

I really, really balked at going but within three hours I was home with a prescription for penicillin (I think chemo recipients get fast-tracked through emergency these days). I was moved pretty quickly to my own treatment room (the most traumatic moments came when I was asked if I minded if a less-experienced nurse accessed my portacath. Within minutes, there were five nurses in the tiny room, in addition to my spouse and I. There was lots of fumbling and it took a couple of tries but eventually they got things working). After examining me, the doctor concluded that I was "a very sick person."

What was foremost on my mind, as I lay waiting for the doctor (in addition to the observation that having strep throat or the flu is nowhere nearly as scary as cancer), was that the Toronto launch for my book was supposed to happen the next day.

I spoke to my publisher but decided not to make any decisions that night, in case I felt better the next day (that was a mix of denial and delirium). My GP called the next morning to check in on me and said, explicitly what I needed to hear, "You are sick. Don't travel." (No kidding)

The publisher decided that morning that they would proceed without me. I was disappointed but understood completely. I sent out a few messages to that effect and went back to bed. When I awoke, I found out that the event had been postponed. I was pleased and sent out another round of emails, tweets and Facebook updates. I am sorry if I confused any of you with these messages (and even sorrier if you showed up for the event to find out it was cancelled).

Everyone at Women's Press was really, really kind to me and very sympathetic about all the scrambling they had to do at the last minute. I will post an update when we re-schedule the launch.

In other news, we had a sleepover involving eight 11 year old boys on Saturday night. My house will never be the same. What made us do this (other than love for our son)? More denial. It appears I am still very good at it.

I also took two extremely excited 6 year olds on the O-Train to the movie theatre. We saw Up. I loved it. And the little dervishes settled down and were mesmerized for the duration. It was the quietest part of my week end.


Wednesday, June 10, 2009

choosing to feel relief

J-Dog, ignoring the paparazzi.


Have you ever been so afraid of something that you've been unable to talk about it

That happened to me early last week when I found a lump under my dog's front leg (in what I keep thinking of as his arm-pit). My heart stopped. I took my hand away and checked again and it hadn't gone away.


As memories of finding the lump in my breast came flooding back, I found myself saying out loud, "This just can't be anything. Lumps can happen for all sorts of reasons." But I felt really queasy.


Over the next couple of days, I kept checking (my poor dog was getting rather irritated with me). The lump clearly didn't bother him (but neither did mine). It felt hard to the touch (bad) but it seemed to move around a bit (good - but I wasn't sure this wasn't just wishful thinking on my part).

Last Thursday, I bit the bullet and took him to the vet. He felt at the spot and said, "It's a fatty tumour." He put his hand on my arm and said, "Am I worried about this? No. And it's not bothering him but if you are worried, I can remove it. Or I can do a biopsy."

"It's benign?" I stammered.


"Yes. It will grow slowly and he will probably get others but unless it starts to bother him, we don't need to do anything."
And then he repeated, "I am not worried."

It was a good appointment. The vet pronounced both dogs to be "perfect" (I'd brought in Lucy, too), gave them their shots and told me to have a good summer.

So I left, feeling europhic.

In the last week, I have felt some niggling doubts, though. I know too much about cancer. I know far too many stories of people who were told that lumps were very unlikely to be cancer, only to find out the worst. Why would dogs be any different?

But the truth is, that I don't know what I would do if the lump were a cancerous tumour. Probably nothing very different. I can't imagine subjecting my dog to cancer treatment.


It was so hard losing Emma but she had lived a long life. I cried for Eli, who died a few weeks ago (we still owe him a eulogy). Losing Jasper, though, who's only nine, would break my heart.
We call him my boyfriend (especially when we exchange meaningful glances and sneak off to bed together). He is sweet and quirky and very, very smart (he hid behind me when the vials came out for the vaccinations, even before he saw the needles). He's an old soul, too, as many have remarked. I am choosing to believe that all is well. The alternative does bear consideration.


I am not the only one who loves this dog.


Gratuitous photo of Lucy.





Tuesday, June 09, 2009

through the years


I missed doing a birthday post for S. this year. His birthday was on May 10 and he turned 11.


My beautiful, sweet boy is on the cusp of adolescence. He is smart, funny and talented and a really good person.

These attributes will serve him well as he navigates the waters ahead.

It does seem like only yesterday, though that he was typing on his first keyboard.


1998


2006


2009





Monday, June 08, 2009

the archives excite me (and not just because i'm married to a librarian)

I love where I live.

I have spent time in almost every Canadian province and territory (I have never been to Saskatchewan or Nunavut). I have lived in small towns and a big city. I am convinced that I am living in the right place for me (I note that it's easy to write this as I sit in the back yard with my laptop on a cool day in late spring. The weather extremes - which are frequent - do test my love). I love the scale of Ottawa, it's beauty (lots of federal money gets poured into keeping the capital attractive) and, most of the time, it's character.

If we had a decent transit system, things would be even better. We could also do with more bike lanes. And we need to fix the potholes so that riding my bike wouldn't be such a jarring experience. But, all in all, Ottawa is just big enough that there are lots of things to do and small enough that it doesn't take too long to get most places.

This past weekend, was Doors Open Ottawa and my family decided to visit a few places that were new to us.

First, we went to the warehouse behind the Museum of Science and Technology (the museum is long-overdue for an expansion and houses far more items in it's warehouse than it has on display, yet the exhibits never seem to change). However, when we got there, we found out that you had to make reservations to get on a tour and that the next tour was not for another hour (note to Doors Open planners: It would be great if this fact were noted on the program for the weekend). My youngest son opted to stay at the museum with a friend and his dad and the rest of us (my older son, spouse, sister and brother-in-law) decided to move on.

Next up was the Gladstone Theatre. The woman who greeted us at the door explained the renovations that took place when the theatre changed hands a couple of years ago. She also told us that, this past season, the plays with a more upbeat theme were infinitely better attended. This influenced the choice of plays for this year's season, all of which will "have you leave with a smile on your face." (My sister whispered to me that the last play she saw, pre-renovation, was called Stones In His Pockets and that it was excellent. That's kind of the opposite of the theatre's current offerings, though). Once inside, we were given an excellent and informative demonstration of the theatre's lighting and sound room (is that what it's called?).

My only complaint was that the theatre had scheduled auditions for the same day as Doors Open and we were asked to leave ten minutes after our arrival (our presence when they were warming up must have been nerve-wracking for the actors. This would have been another good thing to note in the program).

From there, we went across the street to the gallery owned by the Enriched Bread Artists. I have walked by this building many, many times and I thought they made bread there. In fact, the factory was closed a while back and a group of artists bought it to create studio space and a gallery. One of the artists, Danny Hussey, took time out from his work to greet us and answer questions about finding time for art, his background and inspirations. And we saw some very interesting art. I'll go back.

The last place we visited turned out to be my favourite. The City of Ottawa Archives is currently housed (they are moving to a bigger space in the fall of 2010) in a building designed by Moshe Safdie, who also designed the National Gallery and the building has a similar feel, with a ramped entrance, lots of natural light and vaulted ceilings. It was built on an Island and has a stream flowing under the building. It must be a great place to work (and to sit outside having lunch).

What I loved best about the archives, though, was the vault.

I loved the sprinkler system and the fact that their are little disks with wax on them. When the wax melts (from heat) the sprinkler comes on in only that area gets sprayed, thus keeping water damage to a minimum (ingeniously simple).

I loved learning that when old photos disintegrate, they smell like vinegar.

I loved seeing the mayor's robes that have been worn by all recent mayors except our previous one (the archivist said that Mayor Chiarelli declined to say why he wouldn't wear them).

I loved the art and the sports equipment (there was once an abortive attempt to establish a sports hall of fame in Ottawa and the Archives acquired all the exhibits). These will create some wonderful displays in the new building.

I also loved the old ledgers and maps and records of this city.

The Archivist must have loved me. I kept squealing in delight and saying, "That's so cool!"

I might have been less vocal a few years ago but I see no point in holding back positive feedback. I was interested. I was impressed. I was enthused.

It was fun.


Saturday, June 06, 2009

book launch 2.0

This is cutting a little to close to home to be as amusing as it should be.




The guy in the video is Denis Cass (who, as it turns out, has a pretty cool web site) and his book is How I Almost Lost My Mind Trying To Understand My Brain.


Thursday, June 04, 2009

will you be there?


So I have become all angsty about the Toronto book launch.

Despite the fact that the Ottawa launch was a huge success.

Despite the fact that Eve Goldberg is going to sing a couple of her songs - which will be an amazing experience in and of itself.

Despite the fact that many of you have expressed an interest in attending.

So. Will you help to take the edge off the stress?

Can you let me know if you will be there?

You will have my undying gratitude.

Launch info:

Toronto Womens' Bookstore
73 Harbord Street (at Spadina)
June 11, 7-9pm.
With a special performance by Eve Goldberg (at around 7:30), followed by a reading from the book.


Wednesday, June 03, 2009

taking care of my body in 2009: part 6 (or you have to be ready)



First of all, let's review the goals I set for myself last month:


1-Walk VIGOROUSLY for an average of one hour, five times per week (300 minutes a week).

This is a good place to start, since I did well, accomplishing this goal and exceeding it. Next month, I may think about doing something to ratchet up the intensity.

For now, I am also riding my bike around town. As a result, I have a sore rear end. I am sure this will get better.

2- Do either 10 minutes (at least) of strength training or yoga with the Wii Fit or abdominal exercises every day (chemo recovery days excluded).

I did this only 4 times. I also hurt my back this month, pulling my suitcase down from a shelf on the train. I was in a hurry and not paying attention. It was a bit of a wake-up call about the need to improve my core strength.

To that end, I saw my physiotherapist again on Monday. She surprised me by saying that, when it comes to my back, the stiffness in my hips is a bigger problem (she actually said, only half-joking that she is surprised that I can walk). She said it she hasn't seen anyone as stiff as I am in a long time.

So, I now have some stretches that I need to do regularly in addition to the core strengthening.

3-Go to yoga once every week.

I didn't go at all in May. And despite the fact that my physio says that she sees "a lot of yoga in my future" I think that I may not go again until the fall.

It's becoming harder to find a class I can attend regularly (and this will only get worse over the summer, with fewer classes and the kids around more). And I don't really want to go back to the class I have attended the most regularly (the timing is good but the teacher, always more impatient than most, actually yelled and swatted another student the last time we went. It was a bit of a turnoff).

Besides, I feel that I have a lot on my fitness plate right now.

4- Take my vitamin D and calcium supplements daily.

I didn't do this in May either but I am 2 for 3 in June. And going to take them with lunch, I promise.

Now for the big change. I have decided to start doing the Weight Watchers thing again. It's a program that has worked for me before (I lost almost 50 lbs after D. was born) and I feel ready to do it again.

I know I said this last year but this time I have a support group, comprised of two good friends who also would like to get down to their pre-breast cancer diagnosis weight. For four weeks now, we have been weighing in every Monday. They are both doing WW and I have just been reporting on exercise and my quest to eat more veggies.

Then, on the weekend, I admitted to myself that I have the best success when I write everything down that I put in my mouth. And I also realized that I am ready to do this. It wouldn't have done me any good to start earlier in the year. I am ready now. And it feels like the right thing to do.

I did check with my doctor. The conversation went like this:

Me: "I am thinking of making some changes to try and take off some of the weight I have been putting on since my diagnosis..."

Dr.: "Have you considered Weight Watchers?"

So, clearly I have the green light to do this now. And I don't have the discipline to do this any other way than really slowly.

This process will also help me reach these goals:

5-Cook dinner at least once a week.

Easier to count points if I know what went into dinner. Easier to stretch those points out if I prepare lower points options for all of us.

6-Cut down on refined sugar.

I really don't want to waste points on empty calories.

7-Eat seven servings of fruit and veggies a day.

Conversely, filling up on fruit and veggies makes those points go further.

As you can see, I have all the zeal of someone on the third day of a diet. And I'm hungry.

I need to make vegetable soup today.

What goals did you set for yourself this year? How are you doing?




Tuesday, June 02, 2009

i have excuses (no, the dog didn't eat my blog posts)


I'm back.


I didn't intend to keep Will and Billy and the boys at the top of the page for so long. I keep meaning to post but I never seem to get around to it. I wanted to assure those who have expressed concern that all is well.

It's time to re-commit to regular updates and to begin, please let me explain my absence:

The last round of chemo was kind of hard. I'm not sure if I was hit with an additional bug but I experienced some really gruesome side effects (I'll let you use your imagination), especially last Friday, when I should have started to feel better.

The truth is, that I am taking longer to recover every round, these days. My oncologist has suggested that I skip a treatment this summer. I plan on taking July off so I can go to BlogHer (Did I mention that I got in? I was so disappointed when I came back from Florida to find that the conference had sold out. I can't really afford this but when I learned that there was a space for me, I hesitated for only a couple of hours before taking out the credit card. After all, my book will be there, I want to be there with it!)

I'm going to ask my doc if I can take August off, as well. It can't hurt to ask, right?

When I have felt well, I have been running around a fair bit. I have had a bunch of appointments (among other things, I have returned to physio and lymphatic massage, after taking a long break), errands and other commitments.

Last week end, for example, my spouse and I took D. to the Cumberland Heritage and Power Festival. There were so many cool things there, a steam powered rock crusher, water-powered toys and little tiny steam trains on which you could ride. I wish I had brought my camera. The photos would have made a great blog post.

I blame Twitter. I find sometimes that I have begun to compose my thoughts in 140 characters. For example, I tweeted about my brain MRI results but I see that I didn't write about them here (I think this is a common problem. I remember Average Jane citing Twitter as an excuse for not blogging). They were great results, by the way with absolutely nothing suspicious in evidence, or as I reported to my spouse, "There is nothing there."

I have had BSG to watch knitting to do.

Promoting my book, while fun, has left me kind of uninspired. But I am getting past that. How many more times can I say, "Please buy my book?" or "Don't forget about the Toronto launch on June 11?"

The truth is I haven't been doing much writing of any kind lately. And I miss it. I just seem to have fallen out of the habit.

But the only way to make something a habit is to do it.

So here I am.