When I was a young adult, I definitely considered myself to be an extrovert. Then, in 2007, a year or so after my cancer diagnosis (and after being on leave from my job for most of that time), I did the Meyers-Briggs test. The person who explained my results to me said that mine was the most even split between introvert and extrovert that she'd ever seen.

Fast forward to last weekend when I attended the PAB conference. Walking in the door on a Friday night to an environment where it felt like everyone already knew each other was terrifying. My chest tightened, my breathing became shallow and I felt something between "slightly queasy" and "I think I'm about to puke my guts  out." 

I texted Tim, "This is so hard" and sent out similar messages to the Twitterverse (I will be forever grateful to Flutter for her words of comfort and encouragement).

And then I settled in for a great conference. Did I hide behind my Blackberry? Yes, lots. Did I sit by myself instead of joining other folks? Most of the time. Did I go on the evening boat cruise? I did not (my poor brain was too tired from all the big ideas and and the constant exciting but draining stimulation of the day). But I stayed and I learned and during Saturday lunch and over a couple of breaks I forgot to feel awkward and had a really good time. I even stood up to ask a question on the last day (although I forgot the question when I had the mic in my hand. I found something to babble about). For the most part, I think that's good enough.

Paralyzing anxiety disorders run in my family. And I know that the more you give in, the worse it can get. And I know that I've missed out on some truly wonderful experiences over the last couple of years because I've been too scared to go. I confronted my fear last week end. And I'm proud of that.

Next up: Blogging Out Loud Ottawa. Every year, I've found a reason not to go. This year I'm going to be there (hold me to that, would you?). There will be people I know and like. It will be fun. All I have to do is get myself through the door.

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.

 PAB2011 group photo by Maurizio Ortolani, uploaded to flickr by Martin Jones.

A chance encounter on Bank Street with my friend Andrea Ross led to a plan for a dog walk, which led to a conversation about "PAB", which led to me having my mind blown.

The conference is called PAB 2011 (short for Podcasters Across Borders), and is for anyone who is a creater of "content" of any kind, using any medium. You don't have to know a thing about podcasting to attend, just an open spirit and a readiness to share and absorb ideas. It took place this past week end (June 24-26) and my brain is still very, very full.

This year's theme was "Your story needs to be told. Well." As with every year for the last few, the venue was the wonderful Fourth Stage of the National Arts Centre (no fluorescent lights!) and the setting was intimate. There were two longer keynotes and many more 5 minute "jolts" (this link is to Andrea's amazing jolt from last year, which I have quoted many, many times), juxtaposed with 40 minute presentations and questions from the audience.

There was so damn much to take in and almost as much to tell that I'll be brewing blog posts for the next few days (which will make a change around here. I've been an unmotivated blogger of late). For now, I'll just say that my brain is resonating like the inside of a bell.

I am very, very grateful. To Andrea for her friendship and inspiration, to Mark and Maureen for donating a ticket they could'nt use (and asking for nothing in return) and to Mark and Bob for concocting, creating and coordinating this indescribable thing that is PAB.

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.

Last night, my 9 year old lost a baby tooth. This didn't strike me as such a big deal - he's been losing them (including all his front teeth) since he was 6. He, however, was thrilled. "I can't wait to tell my friends."


I didn't think his friends would be especially impressed  but I have never been a nine year old boy. This morning, he walked into the yard at school and straight over to two friends. Watching from a distance, I saw him say something and open his mouth. His friends peered in excitedly and one shouted "Ooh! Bloody!"


I turned to go home, leaving behind a very happy boy all shored up and ready to have a great day.

Big promises.

High Expectations.

Met.

And exceeded.

So much more lies ahead.

I am privileged to share this path

With you.

Happy Fathers' Day.

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.

The other day, Katherine O'Brien shared a Pinterest board called "Metastatic Breast Cancer: Stage 4 People and their Stories." I'm not on Pinterest but I clicked through and was floored by all the beautiful and interesting people from so many different walks of life. So many are so young. So many of little kids, as I did when I was first diagnosed.

It got me thinking how much connections with others has mattered to me over the last 8 years. I looked back at some of my own lists. I looked at the blogrolls of others. And I realized that far too many of these amazing women are no longer with us.

Today's post is not about the sadness and anger I feel when I think about how many wonderful women have been lost to metastatic breast cancer and how little is actually being done to address our needs. 

Today's post is about our voices. About making a new list of women who are living with metastatic breast cancer and writing about that - and so many other things.

In no particular order:

Katherine O'Brien  I Hate Breast Cancer 
@ihatebreastcanc

Catherine Brunelle Bumpyboobs 
@Bumpyboobs

Anna Craig 
@annamecraig

Lisa Bonchek Adams 
@AdamsLisa

The Sarcastic Boob 
@sarcasticboob

Ann Silberman Breast Cancer? But Doctor...I hate pink! 
@ButDocIHatePink

Jen at Booby and the Beast 
@JCampisano

Carolyn Frayn Art of Breast Cancer 
@CarolynFrayn

Lulu Change Living Life Furiously 
@LulyChange14

Uppity Cancer Patient 
@UppityCancerP

Telling Knots 
@knottellin

Kate Kate Has Cancer
@KateHasCancer

Jill Dancing with Cancer

Vicki, Inspiring Breast Metatastatic Breast Cancer Advocacy
@IMBCadvocacy

Susan Rahn, StickIt2Stage4
@StickIt2Stage4

Sarah Illingworth 
@Illingpig

Victory Over BC
@MetaThriving

Phyllis
@Groz_P

Jude Callirgos
@JudeCallirgos

FUBC
@FUBreastCancer

Chantelle Chantelle's blog

Nicole Jasien Walk By Faith Not Sight
@nicolejasien

Honorary club member: 

Nancy Stordahl at Nancy's Point
@NancysPoint

Nancy doesn't have metastatic breast cancer and I hope she never joins us but she supported her mother through mets, has been through treatment herself and is a "staunch advocate" for metastatic breast cancer.

The organizations that don't ignore us:

Metastatic Breast Cancer Network
@MBCNbuzz

Metavivor
@metavivor

Canadian Breast Cancer Network
@cbcn

ReThink Breast Cancer
@ReThinkTweet

This isn't the end. For our stories or for this list. I welcome additions from Twitter or the blogosphere. Just let me know.

Last winter, there was a bit of shitstorm about whether those of us living with mets had the right to be talking about it publicly. It was aimed at Lisa Bonchek Adams but lots of us took it very personally. For me, it brought a re-newed commitment to keep telling all of my story, including the parts about cancer, as honestly and openly as I can (as Lisa so consistently does, with grace, patience and clarity).

I struggled with what to call this post. I personally hate being called a "cancer blogger" because that's not all that I am. I don't even write about cancer in every post. I settled for the rather unwieldy title, above, because I think that's who we are: women, all different from each other, with interesting lives, who write about living with mets and whatever else is of interest to them. I hope to write more about each of them, in the next few months.

 My son and his friends made this video as their entry for a contest. Canadian indie rock artist Joel Plaskett (we're big fans in our house) has invited folks to make a music video for a song from his Scrappy Happiness album. The winner gets a free backyard concert!


 This is where you come in. Please watch the video. If you like it (and how could you not - it's brilliant!), click through to YouTube and "like" it (the like button is under the video on the left side). I know it's a bit of a popularity contest but I'm proud of these kids and think they should be encouraged (and not just because I'm Sacha's mother!). 


 

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.

This image has been appearing as a status update all over Facebook. It really bothers me, and I can't even really articulate why. I think part of me just finds it silly - do we really all think that 97% of our friends won't repost and that only 3% will.?Where do those numbers come from?


The message also implies that if you don't repost, it's because you really don't hate cancer - that you are apathetic or worse. But posting a statement that cancer is bad, is not an act of activism and affects no real change.


In addition, I'm bothered by the statement "all someone battling cancer wants...". Really? You think that's true of every single cancer patient? As an individual person living with cancer I have wanted a new mobile phone and dreamed of fixing up my house. I've also wanted a dog, for my kids to do more around the house, to travel and be able to watch something good on TV on a Friday night. While I've struggled with my health, I have remained a whole person with complex wants, needs and desires. The illness hasn't changed that.


Finally - and I know this doesn't apply to all of us with cancer - but I don't like the "battling" and "war" analogies, especially when we go on to say someone has "lost" or "won" the war. It's not true that only the fighters and the strong survive. And it's certainly not through that those who pass away just didn't fight hard enough.


I know that the people who post this status update have big hearts and are very well intentioned. I don't want to sound mean-spirited or ungrateful. I just want to let you know that this cancer patient would prefer you did something else. Something real. Something more.

Nancy Stordahl is an outspoken breast cancer advocate. She's been through treatment herself and lived through her mother's illness and death from metastatic disease. She started her blog, Nancy's Point, when she was still in treatment and continues to write there today. Nancy is generous with her experience and supportive of others living through breast cancer. Who better, then, to write a guide to conquering the fear of chemotherapy?

Not just another advice manual, Getting Past the Fear: A Guide to Help you Mentally Prepare for Chemotherapy is full of advice and personal observations. It's not a long book, only 60 pages, but to my mind that's a serious advantage. I couldn't concentrate on very much at all when I was first facing treatment. I was given many books that ended up being helpful and interesting but I couldn't read any of them during the weeks leading up to chemotherapy. Nancy understands this and wastes no time getting right to the point (get it? Just like her blog?)

Getting Past the Fear is full of practical tips, many of which I have never read anywhere else. For example, if I had known that you can get a head cap to fit under your wig "to help keep cooler and minimize itching", I might have actually tried to wear one! And it would have been very helpful to know before my first treatment that it's perfectly OK to unplug the IV (from the wall, not your arm!) and wheel everything to the bathroom. Treatment involves a lot of liquid. No one needs a bladder infection added to their list of chemo side effects.

Nancy is very clear that her experience is just that, and that yours might differ and so might your choices. I do think though that most cancer patients will benefit from considering her advice -  to keep a journal, ask for help when you need it, do your research and bring your list of questions to appointments with your oncologist.

Nancy also suggests planning a getaway, to give yourself a break before, during and/or after treatment. In a passage that I especially loved, she writes of her trip to the North Shore of Lake Superior with her husband:

"During that time away, we spent precious moments sitting on our private balcony marveling at the vastness and beauty of the ever-changing water, reveling in leisurely meals...and enjoying each others' company...One afternoon, there was even a brief, lovely wedding ceremony that took place directly below our balcony. The bride and groom and all their guests never once looked up, so they never realized they had two more unannounced wedding guests. Observing an intimate occasion...was a nice reminder of the fact that life was carrying on."

If reading all of Getting Past the Fear seems too daunting right now, you can dip in and out. Read the chapter headings and the conclusions in bold that Nancy has inserted at the end of each chapter. Check out the list of questions for your oncologist. Read the parts that speak to you, then stick the book in your purse for when you next need Nancy's advice. She's even left you a few pages at the end to add your own questions and observations. And if digital media is more your thing, download the ebook for your tablet, phone or ereader.

Nancy ends her book with the following quote: "What lies before us and what lies behind us are tiny matters compared to what lies within us." (author unknown) 

That sums up the book's message rather nicely: You will get through this. You are not alone.

For more information on how to buy Getting Past the Fear: A Guide to Help You Mentally Prepare for Chemotherapy is its various formats, visit Nancy's Point. The blog is also a great resource for anyone facing breast cancer at any stage.

Nancy's offered two copies of her book, one ebook and one physical copy. Let me know in the comments, if you would like either. If more than one person is interested, I'll choose recipients at random.

The author, with some friends.

Update: Would Jo Bucktin and Alene contact me, please? I need to get the info to send you you book!

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.

I kind of left you in suspense yesterday.

I was sitting an exam room, waiting to see my oncologist to discuss whether I could continue my break from chemo. 

Here's what happened next:

We waited.

We played a little Lexulous.

I knit. My hands shook a little.

And then the door swung open and Dr. B. entered the room. 

Dr. B. is not my oncologist. The cancer centre has a title called GPO (which I assume means general practitioner - oncology) for doctors who work with the oncologists. I hadn't seen Dr. B. in more than a year and without hesitating, we hugged each other - something I've never done with any doctor. She's wonderful and she's the only doctor I trust as much as my oncologist.

After a physical exam (liver is where it should be and the size it should be. Chest sounds fine) and looking over my bloodwork (everything normal), we had the following conversation:

Dr. B.: "I'd bet you'd like to extend this break from chemo."

Me (nodding vigorously): "Yes!"

Dr. B.: "For the summer?"

Me: "Or longer? I'd love to think about longer term plans."

And...she shook her head. She said, "When it comes to metastatic breast cancer, there are no 12 month plans."

While it may seem like forever to me that I've been at this, it really is still pretty new. And as I've written before, many times, there is just too much uncertainty to make any longer term treatment plans or even to be absolutely certain what choices are the right ones.

It was very good having Tim there, though, as he brought a different perspective to the table. I wanted to choose between a short break and an indefinite one. Tim's concerns were more about the risks of taking even short breaks from chemo. He loves me and he wants me to feel well but also to stay healthy.

But Dr. B. explained that the break from chemo is not just to give me some respite from side effects (although I needed that, both physically and emotionally) but to help my immune system and bone marrow to rebuild so that chemotherapy, when I need it again, will continue to be effective. She also said that most stable metastatic breast cancer patients need to take breaks long before I did.

This was a breakthrough moment for me. I've been feeling like my body failed me by becoming run down and developing more side effects. I felt like I was wimping out by feeling an emotional need for a break. I felt that I just wasn't strong enough.

I felt ashamed.

However, it turns out that I'm not taking an irresponsible risk by taking a break from chemo. I'm readying my body for whatever lies ahead. And I'm not weak. I've been doing this for more than five years, while continuing to live my life. I'm actually pretty damn tough.

It was a great appointment. I feel relieved of an awful lot of guilt I didn't know I was carrying around. I feel hopeful. And my step was a little lighter today.

So for the next three months, I'll continue on the Herceptin. In early September, I'll have a brain scan (because Herceptin doesn't cross the brain blood barrier) and an abdominal scan. I'll do more bloodwork. And we'll plan for the next three months.

I want to let you all know (those of you who have been asking, wondering or worrying) that the reason I've not blogged since Friday is that I've been incredibly busy and that I haven't fallen completely apart.

I'm still feeling incredibly sad but there have also been some unbelievably beautiful moments in the last few days and those have kept me going.

I'll try and find some time to blog tomorrow afternoon but I wanted to take a moment tonight to say thanks to each one of you who have offered your love, support and understanding.

We're keeping J-Dog as comfortable as we can for as long as we can and I am spoiling him rotten (lots of treats, feeding him from the table, wet food and lots of cuddles).

Goodnight blogosphere. Thank you for reminding me why I love you so much.

Yesterday, I had an appointment with my oncologist, the first since our decision that I should take a break from chemo and do Herceptin only for three months.

I usually do my appointments over the phone but I decided to go into the cancer centre so that I could have a physical exam and meet with him face to face. Also, I wanted Tim to come with me, so that he would get the same info as I did first hand and have a chance to ask questions.

One of the great things about doing appointments on the phone is that I can carry on with my life around the house as I wait for my call. I was reminded of this after waiting first in the waiting area and then in the exam room for nearly an hour.

But it was worth it.

The first person I met was the nurse who works with my oncologist. It was the first time we met face to face. After checking me in, she hesitated for a moment, then looked me right in the eyes and said, "I read the article you wrote for the CBCN newsletter (after the conference I attended last fall). It was wonderful. You are very inspiring."

I hope that I sounded as pleased as I felt when I thanked her. It always means a lot to me when someone is moved by my writing but to hear that a nurse who hears all kinds of stories every day was inspired by me...I was floored.

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.

OK internet, help me out here:

I've been looking for a recipe for healthy snack bars, to replace store bought "chewy" bars. The bars can't contain nuts or peanuts.

My nutritionist sent me a recipe for Chocolate Date Protein bars. I made the bars, following the recipe exactly and ended up with a very, very tasty paste - too sticky to be rolled into balls, let alone made into bars.

She's away indefinitely and I can't find a comparable recipe online. Can someone figure out how to give these bars more integrity?

I used ground hemp. Could that be the problem? Is it possible to buy whole seeds? Would that help?

I don't want to post someone's recipe online but you soak the dates and then blend them with the cocoa and sweetener and then add the hemp seeds for a few seconds at the end. There's no cooking - you just chill it in the fridge.

Thoughts?

I'm also in the market for healthy and nut-free snack bar recipes. Any thoughts there would be appreciated as well.

Today's post is a guest post from the Mesothelioma Cancer Alliance. This is the first guest post ever on this blog but I wanted to share this issue and felt it would be best if someone from MCA explained the issue in their own words.

Here are some facts provided by Cameron Von St. James, whose wife Heather is a mesothelioma survivor. Note that while Cameron is in the US and writes about that country, asbestos is not banned in Canada, either (Update: This is the June 16 editorial from the Globe and Mail: "Ottawa's sunny outlook on asbestos is out of step with the facts."). In fact, Canada's Mesothelioma Center says our country's "mesothelioma cancer rate is now one of the highest in the world."

Have you ever heard of mesothelioma? Most people have no idea how serious this disease can be unless they’ve been personally affected or have seen the never ending commercials. Mesothelioma is an aggressive form of cancer and unfortunately, the only way to develop this cancer is exposure to asbestos. Sadly, there is no safe level of exposure to asbestos, so any individual who has been exposed has a high risk for developing mesothelioma. 

There are many eye-opening facts about this disease such as:

•    “Asbestos” means inextinguishable in Greek.

•    Inhaled or ingested broken asbestos fibers may cause an inflammation of internal tissue and disrupt organ function, which leads to the development of mesothelioma. 

•    Asbestos was used extensively in the mid 1900s and is still not banned in the United States today. 30 million pounds of asbestos are still used each year.

•    Symptoms usually don’t show up for 20 to 60 years after you’ve been exposed to asbestos.

•    Once diagnosed, mesothelioma patients have many options for treatment. Conventional treatment options for mesothelioma include surgery, radiation and chemotherapy.

The Mesothelioma Cancer Alliance has dedicated a significant amount of time in making their site the best resource for patients, families, and individuals who are interested in learning more about the disease. Their mission is to spread awareness in hopes they can prevent this from happening to another family.

Update, June 19: The Globe and Mail "Debate" section has a new article, 

Asbestos exposure: We’re just at the beginning of a health crisis and a longer piece in the Report on Business, called "No Safe Use" .It's a scathing indictment of the ongoing refusal of the Canadian government to even acknowledge the problem, let alone take measures to protect it's people. 

The Canadian Breast Cancer Network has announced that it will be holding an "Advocacy Training Session" in Halifax, Nova Scotia on September 13-14:

"The advocacy training will focus on the issue of metastatic breast cancer and will offer participants the opportunity to enhance their communication skills and effectively deliver strong advocacy messages to a wide variety of audiences."

Priority will be given to women living with metastatic breast cancer, primary caregivers of those living with  mets and to applicants from the Atlantic Provinces. CBCN will be covering all expenses including, travel, accommodations and group meals for those who are accepted to participate.

I'm applying. I think it's critical that women living with metastatic breast cancer join forces to bring attention to our issues (including the paltry lack of funding for metastatic breast cancer research) and to support each other.

Hopefully, come September, some of us will learn how to feel a little less lonely and a little more empowered. And we'll have learned how to share all that with others.

To obtain an application, or for more information contact  Rebecca Wilson at rwilson@cbcn.ca or 1-800-685-8820 x225.

Please share this post with anyone who you think might be interested.

Today sanity prevailed, justice was served and the good guys won.

I don't get to say that very often.

In a unanimous decision, the US Supreme Court ruled today that genes cannot be patented. They were specifically addressing the patenting of BRCA1 and BRCA2 genes by Myriad Technologies, a company that claimed the right to conduct all testing for genetic predisposition for breast and ovarian cancers.

The impact of Myriad's patent was widespread. Several Canadian provinces were ordered to "cease and desist" testing of the BRCA genes. Instead, the provinces were ordered to send the genes directly to Myriad labs, at a dramatically increased cost. Disregarding the order has put Canadian provinces and hospitals at risk of being sued, rendered testing more expensive and, in some cases, halted testing completely.

Patenting also has the potential to deter researchers from engaging in research involving patented genes.

On behalf of the Supreme Court, Justice Clarence Thomas wrote  “A naturally occurring DNA segment is a product of nature and not patent eligible merely because it has been isolated" and ""Myriad did not create anything. To be sure, it found an important and useful gene, but separating that gene from its surrounding genetic material is not an act of invention."

That's pretty clear. And it should have been obvious. You can't patent parts of our bodies.  But the Association for Molecular Pathology, the American Civil Liberties Union, Breast Cancer Action and some very brave women had to take it all the way to the US Supreme Court.

Actress Angelina Jolie brought worldwide attention to the genetic testing, when she wrote an op-ed last month for the New York Times in which she wrote about choosing a prophylactic double mastectomy after testing positive for a BRCA gene. Hopefully, this ruling will eventually mean that more women can choose testing that will allow them to make more informed decisions about their own health.

Want to know more? You can read the Supreme Court ruling for yourself or click on the links throughout this post.

I think this might be the first time I've agreed with Clarence Thomas on anything.

Here's a very short (less than two minutes) , very effective video by the ACLU that explains why you shouldn't be able to patent our genes:

June is a very busy month. The end of the academic year means that there are meetings, plays and endless school-related events (most are fun but they do keep me busy). Also, I've been very distracted because J-Dog (known to us as Jasper Friendly Bear) is very sick.

We are waiting on the biopsy results of tissue taken from several large tumours in his mouth. Honestly, it doesn't look good. Even if the tumours are benign, which is highly unlikely, the surgery to remove the growths would be dangerous and painful (not the mention the fact that having half his upper jaw removed would leave him with a dubious quality of life). Leaving them where they are is out of the question because they are making him very uncomfortable and affecting both his breathing and his ability to swallow.

We love this dog a lot. He's a very sweet old soul, who was born with tremendous dignity, intelligence and loyalty. I can't bear the thought of losing him but I can't stop thinking about it.

And you can imagine that this family would find all of this especially traumatic. As a wise and dear friend said to me, "You have to make sure the kids understand that he's not you." And even as we all understand that, this is all rubbing salt into some wounds that may never fully heal.

This was meant to be a post about writing, though - something I am reminded means more to me than an obligation or an item on a 'to do' list - so let me get back to that now.

Here are my goals for the month (taking up the numbering from where I left off in my last post):

5. Write for ninety minutes, four times a week (or 300 minutes per week). Given how busy I knew I'd be, I thought I'd set a more realistic goal (I'm already behind but not iredeemably so).

6. Write the speech for the Weekend to End Women's Cancers fundraiser (I don't have much of a choice about this one because I'm delivering it on Monday. I've got some detailed notes but a fair bit more work to do. Did I mention that I'm delivering it - at least in part - in French?).

7. Write a first draft of a short story (I've had this idea about Elvis and my home town for a while now).

I'm also going to continue to re-read and edit my draft novel but I'm not going to write that one down as a goal, since it's an ongoing process and I'm on track, thanks to my writing buddy and our regular exchanges and phone meetings.

It felt good to write all of that - about the fear and the grief but also about the goals I have set for myself. Writing gives me hope and a sense of purpose. When I do it well, it gives me confidence.

It's also very therapeutic.

Update: The vet called this evening. It's cancer. We have some choices to make but none will be easy.