writing your way through breast cancer

It's been two days since chemo, so I feel lousy and have the attention span of a gnat.

It works out well for me, therefore, that I have something I've been meaning to share with you all for a while now.

I really like the Philadelphia based organization Living Beyond Breast Cancer. I've been fortunate enough to attend two of their own conferences (one called "News You Can Use" and one specifically for women living with metastasis) and the Annual Conference For Young Women Affected By Breast Cancer, which they co-sponsor (last year's was in Dallas and I'm applying for a grant, in the hopes of being able to attend in Atlanta this year. It will be the 10 year anniversary of the conference).

A little while ago, LBBC contacted me to see if I would be willing to be interviewed for their Winter 2009/2010 newsletter about "writing your way through breast cancer." I didn't hesitate, as this is a subject about which I am passionate.

You can read the interview on their web site. I am also please to not that they have listed "Not Done Yet" under the heading "Creative Coping: 10 Publications To Motivate You."

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.

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.

learning to breathe

Last year, when I was diagnosed with a brain tumour and went through surgery, I was fine.

I mean, the surgery was brutal and recovery was excruciating but emotionally, I was mostly OK.

A year later, except for the back of my head (which is a little bit sensitive), I'm fine physically but the emotional part has become more of a challenge. In the last few months, it's become clear to me that I'm only going to work through it all with a little outside help.

So, I'm seeing a therapist. I know it's the right thing to do and I like and instinctively trust the woman I'm working with but it's not easy at all. 

We've talked about how all my life, I've been pretty good at getting along by stuffing a lot of my fear and anger into an emotional closet. This has, for the most part, been a remarkable coping mechanism. However, no door is completely effective at shutting out the bad stuff and, when it leaks out through the cracks, it manifests itself in ways that can take a very large toll on the body and spirit. At this point in my life, my emotional closet is so full of anger and fear that the door is in danger of bursting wide open. 

I'm afraid of losing control.

I'm embarrassed and ashamed that some of it is so ugly.

I'm scared of taking my darkest thoughts and holding them up to the light.

But I think it needs to happen.

I've also been thinking a lot about how I live most of my life in my head, to the point that I'm really quite disconnected from my own body. At my very first session with my new therapist, she pointed out that when I talk about my fear of another tumour or about certain things from my past, I hyperventilate. And I don't even notice.

She spent most of the second session interrupting me and telling me to take deep breaths, hold them and then exhale slowly. She asked me how I was feeling and I said "Impatient."

What I thought was "I'm paying all this money per hour, so I can sit here and breathe? I can do that at home."

Except that I don't. So she's given me homework. I have to spend two minutes a day, twice a day concentrating on my breathing (we started with four minutes but it felt like an eternity).

In.

Out.

Just taking in oxygen. It's so basic. Yet here I am, 46 years old and learning to breathe.

roadtrip connection

She made him in about 25 seconds.

I was getting breakfast at a hotel in Woodbrige, Virginia with Daniel at my side when an older woman came up to me and said, “You've got a busy guy there.”

I glanced over at my son, who was making pyramids out of the mini-cereal boxes and smiled. “I definitely do.”

“My grandson was just like that,” the other woman assured me. “And now he's on the national speedskating team. He kicked butt at his last competion.”

“That's great!” I said and meant it. I love these kinds of stories.

“So you, see,” the woman added. “It all works out in the end. His name is John-Henry,” she said proudly.

I promised to look him up, and I did. She wasn't kidding. He is kicking speedskating butt and things really have worked out that formerly “busy boy.”

chemo brain or just getting older?

A few days ago, a massive filling popped out when I was brushing my teeth.

I made an appointment with my dentist to go in today. It hurts, so I've been very much looking forward to this appointment, mentioning it a lot and looking forward to being able to chew again.

I was shocked this morning when my dentist's office called, and his assistant said, "You're supposed to be here. Do you remember your filling?"

I hadn't forgotten my appointment or the filling (did I mention it hurts?) but I had been convinced it was at 2pm this afternoon, not 9:20 this morning.

As it turns out, they did have an opening at 2pm, so I will get my tooth fixed this afternoon, after all. As she was hanging up, the assitant said, "It was just a misunderstanding." I responded with "No, I'm an idiot."

Please tell me that this kind of thing happens to you, even if you've never had chemo.

pondering options

I know that some of you are waiting for a post about yesterday's appointment. I do plan on writing a longer post but have been too busy with lots of good things to get to it.

For now, I'll just say that I'm fine. I was actually offered options at my appointment and have to make choices. This is not bad news, though, just not what I expected. We're doing lots of talking and reading and re-visiting. The radiation oncologist has referred me to surgeon for consultation. I'm still going into the Cyber queue and one way or the other will be dealing with the tumour in 3 to 4 weeks.

Stay tuned for a more detailed post in a day or two.

so i voted

Yesterday, municipal elections were held across Ontario. We elected our mayors, city councillors and school trustees. And I almost didn't vote.

I had a few friends ask me, in the days before the election, "Who are the progressive candidates? How are you voting?" I was at a loss to answer.

The truth is that our mayor, while not running unopposed, might as well have been. And while I acknowledge that he's very hardworking, I'm not a big fan.

My city councillor seems like a decent enough guy but I have not found him to be very responsive, the couple of times I've had to contact his office. I've also heard interviews with him, where he seems to arguing both sides of any given scenario. I'm not sure that makes him very effective at city hall. At any rate, he too seemed to running without any real opposition.

The candidate for school trustee was literally running without opposition, as he was acclaimed.

In my corner of Ottawa, the election was not very exciting and participation didn't seem compelling.

Then my kids overheard my spouse and I talking about the election and asked why I was considering not going to the polls on voting day. I had a hard time coming up with an answer that didn't sound apathetic and lazy to my own ears.

In 1988, I was part of an exchange program, that took me first to Alberta and then India. While we were overseas, a federal election was going to take place. At that time, people out of the country for an exchange program could not vote in advance polls or cast a special ballot (this loophole has long been changed). I was bitterly disappointed, as this would have been the first election since I had come of age.

The other thing I remember is that in my group of 7 Canadians (and seven Indians who looked on with interest), I was the only one who cared that we couldn't vote. As someone who bitterly opposed the sitting government, I wanted to have my say.

I have come to understand the perspective of some of my friends. We are not going to affect great change solely through the ballot box. I guess I've just decided that the ballot box is still important.

My kids are interested and engaged with the world around them. I don't want to send the message that their mother is apathetic or so jaded that she couldn't be bothered to walk three blocks to the polling station.

So I picked up my youngest from school yesterday and took him with me to vote. He watched me fill in my ballot and submit it for tabulation (electronic! Can anyone explain to me why we don't have this at the federal level?). In the end, I filled out my choice for councillor on the single ballot but didn't vote for any mayoral candidate. On the way home, we discussed how I had filled in my ballot and my reasons for making the choices that I did.

All over the world there are those who are denied the right to vote. As a woman, I have only had that right for a short part of my country's history. Showing up at the polls may not change much but I'm glad I have the chance to do so. And I want my kids to understand the range of options they can use to make their voices heard, even in a tiny way.

talking "not done yet."

I'm going to be on BlogTalk radio tomorrow!

The show: Lovebabz Lovetalk.

The time: 12:30-1:15 EST.

The call-in number: (718) 766-4895

The subject: Not Done Yet, Living Through Breast Cancer.

Please call in, if you can. I am really looking forward to this on-air chat with my friend Babz.

don't assume i'm wrong about this

My recent medical experiences have made me a bit cranky. 

Today, I called to find out how long it will take to replace my port, since someone has to come pick me up. At the beginning of the call, I clearly explained that I was having my port replaced and that I needed to know how long it would take.

Medical professional: "Are you getting a port or having one taken out?"

Me: "Both."

Medical professional (Sounding incredulous):  "Both?"

Me: "Yes, I already have a port and it has stopped working. I'm having it removed and a new one put in."

Medical professional: "Have you talked to someone about this?"

(This is where Tim, when I was relating this, said, "No, it was just an idea you had. You thought it would be fun.")

Me: "I have talked to C. Many times."

(pause)

Me: "The procedure is already set already set up. I just need to know how long it will take."

Medical professional: "Well, putting in a port takes three hours. Taking one out usually takes half an hour."

Me: "OK. Thanks. I'll say that they should pick me up 3.5 hours after surgery."

Why did that have to be so hard? Why couldn't she just answer me? 

I'm starting to become very annoyed with questions that are pretty much irrelevant to the medical professional involved. Just like the nurse who insisted that I couldn't possibly be on Herceptin, the questioner did not need to know any details. The appointment is booked. I'm having the procedure. Just tell me how long I can expect to be there.

I know this sounds a bit pettty. And I do want to say that 90% of the medical staff I've dealt with over the years have been excellent. I've just lost patience with the ones who don't even seem to try.

I wrote a list of "Do's and Don'ts for Medical Professionals" a few years ago. I know that it's been included in at least one package for medical students. Here's another I would like to add:

Don't assume that the patient is wrong.

Of course, common sense is required here. It's best to double check before running a test or administering drugs. But even that can be done in a way that acknowledges that the patient knows something about her own body, medical condition and experiences. 

When I first met my surgeon last year, he asked me why I had asked for the MRI that found the tumour. I explained that 30% of women with Her2+ metastatic breast cancer go on to develop brain tumours. 

The doctor turned to his student and said, "See? That's why I say we can learn from our patients."

Now, that's what I'm talking about.

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.

and so it begins

Received September 6:

Hi Laurie,

Would you be interested in guest blogging for us in October? I have some fun ways to make it a great partnership for both of us AND for the fight against breast cancer. If you're interested, let me know and I'll send you the proposal!

Julia Fikse
Creator/President

Ta-tas® Brand www.savethetatas.com
Laughter Heals® www.laughterhealsgifts.com
Save the Ta-tas Foundation www.savethetatas.org

Sent September 8:

Dear Julia,

No thank you. I suspect that you didn't really look at my blog before making this offer. I have metastatic breast cancer - long past the stage where "saving the ta-tas" is an issue.  I may have lost a ta-ta (despite your best efforts) but I am alive, which is what matters.

Also, while I do  have a pretty good sense of  humour, I don't find your products to be amusing (actually, I find those in the men's section to be distasteful and insensitive). I'd prefer to encourage my readers to donate to organizations that really make a difference and use all the funds (as opposed to 5% of sales) for advocacy, awareness, research and building community.

very sincerely,

Laurie

and then all this happened

As our story left off a couple of days ago, I was grumpily bracing myself to go through one more test and then dig in my heels when it came time to make a decision that was right for me.

Aren't there dozens of aphorisms about paths being full of twists and turns? That's certainly how it went for me, yesterday.

The day before my appointment, the port-team coordinator called and asked if I would mind moving my appointment up from 12:30 to 12:00. Despite the fact that I was going to have to skip an exercise class, I agreed easily - in part because I didn't mind an excuse to miss the class, partly to be accommodating and partly because I had lunch plans and I wanted to get them as early as I could.

The next day, I arrived for my noon appointment. There was a single receptionist on duty in the busy X-ray unit in which the port team is housed (Module X at the General for any Ottawa folks). I got in line, checked in and was directed to take a seat while I waited to be called.

After 40 minutes, I decided it was time to check in again with the receptionist (at my previous appointment, I had patiently waited for an hour. The receptionist suspected I'd been forgotten and someone did come to get me suspiciously quickly after I checked back in). She called the port team. No one answered the phone. The receptionist took my info and said she'd keep trying.

At 1:30pm, fuming over the fact that I'd actually been asked to come in early, I queued again to see the receptionist. Looking surprised to see me, she picked up the phone and then put it back down, "I'm just going to check what's going on. You've been waiting a long time." She apologized to the line-up of people behind me and disappeared down the hall.

A few minutes later, she re-appeared, shaking her head. "There's no one there."

I must have looked as angry as I felt when I said, "I'm going home. Thanks very much for your help but I need to leave now and I'll deal with this later." The receptionist nodded, sympathetically.

Fortunately, my friend Doreen had arrived while I waited and done a very good job of distracting me. She waited for me while I grabbed my stuff, muttering angrily, "This is so going on my blog!"

Doreen took me out for all you can eat sushi (by the time we were done waiting, I had been hungry enough to chew off my own leg). When we were finished, I felt sated and infinitely calmer. The adrenaline from anger and stress had also seeped away. I nearly fell asleep in the car on the ride home.

I called and left a message for the C., port coordinator and collapsed on my bed. I woke up an hour later and a few minutes after that, the phone rang. It was C. calling me back. She was profusely apologetic.

I demanded to know what happened. Apparently, someone had communicated to the port-team that my appointment had been moved to another hospital and, without checking with their boss (or looking in the waiting room), they left. 

C. told me that she was furious. I said, "I'm glad you're furious because so am I. In more than 7 years of treatment I have never experienced anything like this."

She said that she understood and that "this is not normal and it's been addressed." 

I believe her. She was spitting mad. C. has always returned my calls promptly and seemed both competent and professional, so after a few more minutes of this, I decided to move on. "So what now? How can we fix this?"

We had a long conversation about what could be determined by further testing and the likelihood of being able to fix my port without surgery. We agreed that, at this point, it makes the most sense to just remove and replace. The Drano-fluid flush will only fix it if it's clogged. And the odds of that working, are only 50-50. 

I really don't know if I have all the right information but, frankly, I'm fed up and want this to be over. I'm ready to go under the knife, for the sake of a working portacath.

I took a deep breath and said, "I don't want to move the port to my right side."

C. explained to me again that the route from a right side port to the internal jugular vein is shorter, so there are fewer problems. 

I said, "I understand that but I've had a left-hand port for more than 7 years without incident. I already have a big scar on my left side and I'd really like to avoid having another on my right."

And then...she gave in.

"Well, then we can just put your port in on the left side. It's worked for you in the past and you want to avoid a new scar. That's no problem."

It was easy. I told Tim, it felt like they were ready to agree to anything after what had happened. "I should have asked for them to throw in 500 dollars for my trouble."

Now I can start fretting about the details. I have to go to the cancer centre lab and have bloodwork done. next week. Surgery will be on September 17th (on the same day as my next treatment), at 8 in the morning. I need to make sure I have someone to drive me (I'll be sedated during the procedure. Last time, I needed a wheelchair to get to the car but it all wore off fairly quickly, once I was home). Daniel will need a place to go before school, since Sacha has a doctor's appointment and Tim will have to go with him.

It's all a little stressful and the whole idea of implanting a port freaks me out a little, even though I've been through it before. I"ll be very glad when it's done.

And for the record, not once yesterday, did I say the words, "It's OK." I was too mad to be a good girl.

Update:  Our favourite pizza place forgot a topping on one of our pizzas. I called to complain. They offered to send another pizza. I said, "No. We'll eat what we have. Just give us a credit towards our next order." I'm on a roll.

he's only six years old

Today's scheduled post is being pre-empted by a story I want to share with all of you.

My younger son, D., had an appointment at the dentist's today. I decided to turn the day into a special outing and go out for lunch and then to the movies (G-Force. I still do not like rodents).

When the movie was over, he announced that he had to go to the bathroom. As I wrapped up a phone call with my spouse and went to open the bathroom door, a man stepped towards me and said, "I think he's way too old to go in there with you. He looks like he's at least four years old."

I thought he was kidding. I smiled and said, "He's six."

"Six! You really shouldn't be going in there."

He was serious. And outraged (I'll bust some stereotypes and tell you that he was young - no older than early 30s). As I stepped around him and gently pushed my son through the door, I heard him say, "I'm going to talk to the manager."

I was flabbergasted.

D. was quite upset as he has been really reluctant to go into the women's washroom for the last year or so (although lately he's gone in with me when we are out alone without complaining).
He was mortified.

I am not an overly protective parent nor am I prone to paranoia. I also know all that so many more children are harmed by adults they know than ones they meet in the bathroom at the movie theatre.

However:

He can barely reach the taps in public washrooms, let alone the soap dispenser.

He often can't get the stall door to close.

Sometimes, he can't get it open.

Despite his protestations, he's afraid to be by himself in an unfamiliar place.

He's six years old. And it is still several years before I am going to let him out of my sight in any public place.

When I was six years old, a stranger exposed himself to me.

I let my 11 year old go into the men's room by himself. Once, when D. had a friend with him at the movies, I let both boys go in together and stood outside with my heart in my mouth until they re-appeared (I asked if they had washed their hands. My son said, "Yes!" His friend said, "No, you didn't!").

I think the answer to "When is your child old enough to [fill in the blank]?" depends very much on the individual child and on the parents' comfort level (I often say that it's really good that my boys have two parents, otherwise they would never be allowed to do anything). I am, however, very comfortable asserting that my six year old will be coming into the women's washroom with me for a while yet.

And what's the big deal, anyway? Women's washrooms have stalls. It's not as though D. is peeking under the doors. When I went to university, at least one of the residences had only co-ed bathrooms. Now that was weird - brushing my teeth in the morning and having some guy walk by in a little towel.

How do you handle the bathroom situation when out with your kids? How do you feel when you see a child of the opposite sex in a public washroom?

twilight zone

Nurse (shouting from the other room): "How old is your port?"

Me: 7 years

Nurse (still hollering): Holey Moley. That's old. (pause) Are you sure?

Me: March 2006.

Nurse: When was it last accessed?

Me: 4 weeks ago, tomorrow.

Nurse: What are you getting?

Me: Herceptin.

Nurse: For 7 years? 

Me: Yes.

Nurse: No. Herceptin is for one year. 7 years is not possible.

Me: It is when you're metastatic.

Nurse: Are you on (name of drug I don't remember)?

Me: No. Herceptin.

Other nurse: It's Herceptin. I checked her chart.

Unbelievable.

just another conversation

I've started to record bits of conversation that occur at our house. This one took place yesterday morning betweem my spouse and me.

T.: "Can you send a Facebook message to someone who's not your Friend on Facebook?"

Me: "You can. I get emails all the time from strange men saying they can't live without me."

T.: "You do?"

Me: "Yes, sometimes they say they saw my photo and that they can't stop thinking about me."

T.: "Wow."

Me: "I especially wonder about those because my profile photo is of the dog."

(Conversation interrupted by laughter)

Me: "I think they might be spam."

T.: "In those cases, I hope they are, because the alternative is disturbing."

free to a good home (part 2)

A few weeks ago, I wrote that I had an almost new prosthesis that I was seeking to re-home. This is what happened next:

Julia consulted other directors of Breast Cancer Action, who suggested that there might be a program to send prostheses to developing countries. She also called the social worker at the cancer centre who told her that Canadian Cancer Society takes donations (1745 Woodward Dr., Ottawa, ON K2C 0P9. 613-723-1744). I am so grateful to her for doing this.

Throws Like A Girl , who is part of our group at Mothers With Cancer, suggested that we need "a prosthesis relocation program."

Imstell jumped in with the following:

"Maybe we [Mothers With Cancer] could just host a bulletin board where people could post their needs:

FREE TO GOOD HOME Single 36C teardrop prosthesis. Likes to travel. You pay shipping.

WANTED swimming prosthesis. Any size large enough to hide my belly.

These had me laughing out loud but I think we might actually get something like this going.

Finally, Christine told me that she has a friend who lives locally, who was in need of a new prosthesis. It turned out to be a perfect fit.

Thanks to all who commented here, via email and on Facebook. You made me laugh. And you made me feel good about the power of community.

We are off to the maritimes tomorrow (if all goes well-it's a two-day drive with two kids and two dogs). I may be offline until August 12. I feel the withdrawal pangs starting already.

having a wonderful time. wish you were here.

I am having my best BlogHer ever.

The biggest difference is that I am more comfortable in my own skin, more at ease with who I am and more willing to take risks when it comes to approaching people.

I also know myself well and am making the choices that are the right ones for me. This has meant that I am not pressuring myself to "network" not doing the parties and welcoming opportunities for one on one time with interesting people. This has led to the creation of some lovely memories and the deepening of some friendships.

Yesterday, I attended sessions on "The Transformational Power of Blogging," "Blogs and Body Image: What are we teaching our kids?" and "Patient Bloggers: You are not your disease - you just blog about it every day." Every one was excellent.

I toyed with the idea of skipping the "Community Keynote" but I'm so glad I didn't. A series of bloggers read selected posts from their blogs, each more funny or sad or powerful than the next. And some really beautiful pieces of writing.

Last night's cocktail party was a little grim (karaoke! ouch!) or maybe I am just getting old ("the noise! I couldn't have a conversation!") The free booze just wasn't enough to make me stay. Luckily, I invited Elana to have dinner with me - and she said yes. A pint and a bite and some lovely conversation later, I felt restored.

Today, I have visited the vendors, talked to people and, at lunch, I did my book signing. They had us tucked away in a far corner of the Expo hall, so it was a little slow. I was signing with Ilene Chaiken, creator of the L-Word and we still didn't draw more than a handful of people. I've sold and signed a few books, though and have done as well as anyone else here.

Next up is a session on "Online Safety for Your Kids Who Are Online Themselves." I just hope it's not all scaremongering.

I think I'm going to skip the evening cocktail party and go have some deep-dish pizza with Suzanne, her parents and some other bloggers.

This time, I wasn't to oshy to ask for a celebrity photo (that's Ilene Chaiken on the left and BlogHer co-founder - and blurber of my book - Lisa Stone in the centre).

not this time

We got back yesterday evening from my spouse's family cottage. It's a place I love and where I am always happy, even when the weather does not cooperate.

So despite the fact that I couldn't bring myself to go swimming and I didn't sit around on the dock in my bathing suit, I still found time to read, enjoy the company of family and make art with D. ("Who would have thought that painting could be so much fun?" he said. "Using your imagination!"), knit, go for walks, eat and drink too much and just relax. My spouse taught S. how to play Backgammon and D. taught me how to tolerate playing PayDay.

It was all quite lovely, even if we we did miss the sun.

On the very last night, though, D. woke with a fever and could not get back to sleep. He threw up twice (and copiously) on our long drive home.

I kept him home today and let him watch DVDs in his pajamas. By this evening, he was asking to go to the park.

Through it all, I comforted, fussed and nursed. And tried not to heed the guilty voice in my head: "The kid has lousy timing! I can't get sick. I leave on Thursday for BlogHer!"

This evening my head hurts and I am achy. I feel just as I did before the fever set in, on the day before my ill-fated Toronto book launch.*

I cannot get sick. I will not get sick. I am going to bed and tomorrow, I will wake up feeling well.

Cross your fingers for me, OK?

*temporarily ill-fated. Re-scheduled for October.

for Orit

photo: Andrea Ross/Mark Blevis

As of Saturday, June 30th, I have been in remission for five years. This is a huge milestone and I'm very fortunate to have the chance to mark it.


But I really didn't feel like celebrating.


Just a couple of days before, my beautiful friend Orit passed away, leaving three young kids, a loving spouse and a large group of family and friends in deep mourning. I spoke to her husband Sean early on the day she died and afterwards posted on Facebook what was for me an unusually vague status update:

"Warning: This would not be a good day to tell me that everything happens for a reason. Sometimes wrong stuff just happens. And sometimes life is terribly unfair."

So much about cancer is a crap shoot. Some get cancer, some don't. Some walk away, others live with the illness forever. Some live for a long time and some die way before they are ready to go.


Orit had strength and determination and a great love for her family and community. She had access to the best health care and, prior to being diagnosed with Stage 4 breast cancer, was healthy and fit. She never stopped fighting to live and she most definitely did not lose a battle.


Despite the fact that we lived in the same neighbourhood, I met Orit less than a year ago, not long after her cancer diagnosis. Our illness brought us together but we soon found that we had so much more than than cancer in common. We both found humour in the world around us, sought to nurture our creative selves and wore our hearts on our sleeves when it came to those around us. I had the privilege of watching her face light up when her husband got home and the clear eyed love she had for each of her kids. We had the chance to talk about being in cross-cultural relationships and about the values we hoped to share with our kids. We talked about petty grievances and big ideas. And we shared our fears, hopes, sorrow and anger at facing the scourge that is cancer.


One evening, as we were yarn bombing our local community centre, Orit and I sat on the pavement sewing a 6 foot tube of yarn onto a bike rack. As we took turns holding the piece in place and passing the needle, she suddenly said. "I really wish that we had the chance to know each other before. We would have been such good friends."


I felt my heart break as I struggled to find an appropriate and truthful answer. But I knew it would be wrong to say "We will get to be friends for a long time" or even "It's going to be OK." Instead, I said swallowing the lump in my throat, "I agree. I wish I'd met you sooner as well."


The last time I saw Orit, we had tea on her front porch while she knit. She had been in the hospital the night before because of unmanageable pain. That morning she seemed fine, if weak. She talked about convincing her oncologist to try one last course of treatment and her profound grief at the thought of leaving her children. We both cried.


And then I left for a yoga class, borrowing a t-shirt before I left. It didn't occur to me that I would not see her again.


A few days later, she was hospitalized. And a few days after that, she died.


I wish I had told her how amazing I thought she was. That I thought she was a great mother, an interesting person and inspiring in a way that transcended her illness. I wish I'd said how beautiful she was.


I've struggled for two weeks to write this blog post. Orit's family have been so kind, loving and generous to me but I can't help thinking how grossly unfairly life has treated them.


Which is why I haven't felt like celebrating.


I am very lucky to be alive and I hope to be around writing blog posts in another 5 years. None of us knows when our time will come. We need to live bravely, love fiercely and hold on to the things that matter. We need to tell those we care for how much they mean to us and to do those things we always wanted to do. No matter how long we have on this earth, we need to truly live.


I, for one, plan on doing a little more yarn bombing. I have Orit's last piece of knitting so a little bit of her will be there as well.


Care to join us?

video: Mark Blevis