questions off the grid

 Last week, I spent several days in a cabin on a very quiet island in Northern Ontario. It was bliss.

We were also completely offline. No phone, no electricity, no internet. I didn't mind one bit but it did serve to underline how often I have come to rely on Mr. Google to provide information. Here are just a few of the questions that went unanswered:

What is the difference between NASCAR and Formula 1?

What is the weather forecast?

What is fracking?

How do I knit cables without making holes in my knitting?

Who bought the Body Shop?

Why does the carbon-monoxide detector keep going off?

What are the health benefits of okra?

What are the ingredients in sweet potato pie?

What dogs are in the high risk group for bloat?

Are coffee grounds good for the septic system?

Is there a specific person assigned to travel with the Stanley Cup?  (The internet has failed me on this one! One link said there are three Hall of Fame staff who travel with the Cup but when I clicked through to the the article itself, the info was not included).

going away

Later this morning, my dog and I are going off on an adventure.

We're taking the train to Toronto and then piling into a van with two big Labradors and one of the people I love the most in the world. We'll drive several hours in a northerly direction and then we'll take a boat to a quiet island.

For several days, we will eat, talk, walk, read, I will knit and we will talk some more (or at least the humans will. The dogs will join in the walking part and will do their own share of eating). We will be completely off the grid.

On Thursday, we will pack up our gear into the boat and reverse the process to travel home.

This is the second time we have done this (although the first time for Lucy, my Tibetan Terrier). Last year, I had been teetering on the edge of a depression and came home feeling restored. This year, I'm in a much better space and absolutely giddy with anticipation.

There are lots of potential challenges - last year the boat wouldn't start but we were able to find the home of the guy who rents some. Whatever, comes up, though, we will have each other and some good stories to tell.

See you on the other side.

leaning in

A friend on Facebook shared a post by Alexandra Samuel about the practice of "leaning in" in the context of dealing with one of her kids' ongoing troubles with school:

Instead of the emergency visits that might come at any time, we decided to schedule daily visits to school, so both we and our kids would know when one or the other parent was going to appear. We told the teacher to count on our regular arrival time, and to set aside work we could do to be helpful while we were in the classroom. We opened our calendars, and made a schedule of who would cover which days. We stopped resisting, and decided to lean in.


“Leaning in” is the practice of accepting what you have tried to avoid, resist, or struggle against. As Tara Brach puts it in Radical Acceptance: Embracing Your Life with the Heart of a Buddha,

As we lean in, we are inviting, moving toward what we habitually resist. Leaning in allows us to touch directly the quivering, the shakiness, the gripping tightness that is fear. Whether it is a familiar but vague feeling of anxiety or a strong surge of fear, leaning in can help us become aware and free in the midst of our experience.

This post has stayed with me. And in the last few days, I've re-read it many times. I have a few issues in my life that I have been avoiding and the anxiety is mounting, subtly but gradually. Perhaps it is time to lean in.

growing up

Daniel, who is eight years old, has been badgering us to let him walk the three blocks to school by himself. I'm not ready.

I've known for a while that this time was coming. Last year at this time, he was still holding my hand. Now he likes to walk a few steps ahead. I have to give him his hug goodbye before we are within sight of the school. When he walks into the yard, he doesn't look back.

A few weeks ago, I sent Daniel to the corner store down the block by himself for the first time. He came back clutching the chocolate chips he'd been sent for so tightly that half the bag had melted. And he was so, so proud.

Yesterday afternoon, Daniel asked Tim to ride ahead on his bike so that he could walk by himself. "Let me show you what I can do," he said. So Tim let him walk, circling the block a few times to check up on him and I waited anxiously at home for the knock on our door. Again, when he arrived home, my boy was so, so proud.

I remember the gut-wrenching anxiety I experienced when his brother was this same age and demanding to be allowed to walk on his own. In the years since, we have gradually given him more freedom and he's impressed us with his sense of responsibility - even in some very challenging situations.

It ought to be easier the second time around - and it some ways it is. I feel more relaxed as a parent since Sacha has acquitted himself so well. But I still worry every time one of my boys is out of my sight for too long.

Mostly, I don't like having to let them go. The days of thirteen year old Sacha sitting in my lap to watch a movie are behind us. Every hug from him is precious because they are doled out so sparingly. And Daniel is my baby. There are no little ones coming up behind him to help mitigate my sense of loss.

I know that kids must grow up and away from their parents. A big part of this whole exercise of parenting is about teaching them to be happy, independent people. I just wish it weren't happening so quickly.

And I still want to walk down the street, holding my baby's hand.

not worried

I had a heart scan at the hospital today. 

I rode my bike there up some pretty steep hills.

I was so engrossed in my book, I didn't hear the technician the first time he called me.

I fell asleep during on the scan table.

I guess I'm not too worried.

a perfect example (one for the pinxploitation hall of shame)

From the Campaign for Safe Cosmetics:

Procter & Gamble's cosmetics division is making a big deal this month about supporting early breast cancer detection, an important issue. But we think P&G should start with prevention by promising to stop using chemicals linked to cancer in its products.According to the Skin Deep database, P&G still uses parabens – in particular, methylparaben – in hundreds of its Cover Girl, Max Factor, Infusium and other products.
Parabens are compounds widely used as antimicrobial preservatives in cosmetics products. They're also estrogen mimickers, and have been found in breast tumors.
A new study found that methylparaben can not only cause healthy breast cells to behave like cancer cells, but also interfere with the effectiveness of tamoxifen, an important breast cancer drug.

Please let P&G and everyone else know that this pinxploitation is completely unacceptable. If they care about more than pinkwashing their products, they would stop including carcinogens among the ingredients of so many of their products.

"wear black and save the rack" (from 'ihatebreastcancer')

Words from a woman after my own heart:

...we here at the I Hate Metastatic Breast Cancer Foundation have a saying: If You Can’t Beat ‘em, Join ‘em.

I am so pleased to embrace this noble cause for all of us on this brave and selfless journey of ours. Yes, the I Hate Metastatic Breast Cancer Foundation has now latched  on to a surefire vehicle to beef up the anemic state of metastatic breast cancer research*: BRACELETS! But not just any bracelets, MBC Bracelets.

Our MBC bracelets are not a gaudy yellow or girly pink but a tasteful and understated black. Each one comes with a photo and the personal story of a U.S. person who died from breast cancer last year. Choose from more than 45,000 stories! More added every day!

You can read the rest of the post at ihatebreastcancer.

please be aware

Today is Metastatic Breast Cancer Awareness Day.

Six years ago, I thought I had a pretty good vocabulary but I didn't know the meaning of "metastatic" until I was diagnosed with breast cancer.

According to the American Cancer Society, only 15 per cent of women with mets will still be alive 5 years after their diagnosis. I'm one of the lucky ones ( stats are bogus anyway).

I think one of the reasons I get so angry at campaigns aimed at "saving [insert infantile name for 'breasts' here]" is that, for those of us with metastatic breast cancer, the breast was only the beginning. Our cancer has spread to our bones, brains, liver, lungs or skin. We are "the bad girls of breast cancer."

And we want you to know about us.

We are:

Catriona

Rachel

Katie

Jeanne

Deanna

Judy

Susan

Katherine

Eileen

Delaney

Kristina

Dirty Pink Underbelly

Susannah

And we remember:

Sarah

Emily

Rebecca

RivkA

Sue

Andrea

Kate

Chris

Daria

Lisa

Jill

Renee

go read this

Throughout BREAST CANCER AWARENESS month, I'm going to be featuring posts from around the web that really resonate with me on the subject of pinkwashing.

Today's post called Breast Cancer Awareness, Jersey Shore Style is from The Cancer Culture Chronicles.

"This is how "In Jersey / Jersey Shore Magazine" depicts what they think is important for the women of the Jersey Shore area to know about breast cancer...On page 52 we're treated to a Tickled Pink fashion spread of glossy made-up survivors in their breast cancer charity of choice t-shirts and then bedazzled in all manner of pink ribbon accessories and jewellery all available for purchase at listed stockists. As for the copy; here's my personal favorite..."showcased here in an array of pink items, they show a verve and vitality that is the essence of the spirit of all survivors...." Nothing says verve and vitality like a $139.95 Sparkle Strong Breast Cancer Survivor Necklace I guess!"

If you want to understand more about living with metastatic breast cancer and why some of us bristle (and even rage) about all the pink crap, check out the info on the right side of the blog. Well written, informative and entertaining. This blog is well worth reading.

being the first

It turns out that a cardio-oncologist is a doc who knows something about the heart and oncology drugs. The guy I met yesterday looked way too young too have studied for that many years but really did seem to know his stuff.

Perhaps I'm just getting old.

Some things I learned:

My heart was permanently damaged by the Adriamycin. As a result, my ejection fraction has been bouncing around the low range of normal for years.

Echo cardiograms have a ten point margin of error, so my ejection fraction may not have dropped as much as it appeared.

I have no symptoms of heart failure.

Should I have the symptoms of heart failure, I should go to emergency (no kidding!).

There is no reason that I cannot engage in vigorous excercise (there goes my excuse for not running).

I don't need to stop Herceptin (awesome news).

I might have to go on a drug that protects my heart. The doc is on the fence about it right now but if my ejection fraction drops much more, than he will prescribe it.

Even then, I still won't have to stop Herceptin.

I am being sent for a MUGA - a different kind of heart scan - to see if it picks up anything different than my echo.

I mentioned that there must be some uncertainty, given that he likely hasn't seen many people who've been on Herceptin on a long term basis.

He told me that I am the first. But that there will likely be many more.

no pink for profit runs/walks for the cure v2.0

The miraculous photo in which we all have our eyes open! photo: I. Hendel

There was some incredible coverage in the Ottawa Citizen this year. All the articles listed below were also in the Saturday print version of the paper (for my American friends: the Saturday papers have the highest circulation, as yours do on Sunday):

Seeing red over pink ribbon campaign.

Pink fatigue. 

Think before you pink.

A short history of pink.

Getting choosy about sponsorship.

The Citizen also posted a short video to their web site:

Thanks so much to all the team members (including those who who were not able to attend the walk/run) and to everyone who donated. Special thanks to Andrea (who is the real woman wearing the pinnie in the Citizen photos) for holding my hand through the surreal filming of the video and to our honorary team members, Tim (picked up the team kits and t-shirts) Ian (took photos and custody of our stuff while we walked and Lee (stepped up with kid distraction when it was very much needed).


May we all be healthy and able to do it next year. And may there soon come a time when the Run for the Cure is a thing of the past.

"I'm running for...Deanna, Susan, Judy (and me). 
In memory of Sarah and Rebecca." 

photo: A. Ross

no pink for profit runs (or walks) for the cure in 2011

No Pink for Profit has been formed again for the 2011 Run for the Cure.

Want to help raise the right kind of awareness and help fund advocacy, outreach and research?

You can make an online donation. It's easy! It's fun! It's for a good cause.

Your support is very much appreciated.

this could be me

I've been on Herceptin for nearly five years. I think I'm alive because of it. And I'm fervently hoping that my heart bounces back quickly so that I can continue with treatment. 

However, should I have any kind of relapse, funding for Herceptin will be withdrawn, despite the fact that studies show that switching up treatment regimens (pairing another drug with Herceptin) can give good results.

Earlier this year, breast cancer patients and advocates in Ontario fought for and won access to Herceptin for women with early stage breat cancer. Now, we must lobby to extend this access to women with metastatic breast cancer who experience a progression of the illness.

From the Canadian Breast Cancer Network:

We are reaching out to you today to let you know about the inequitable access to care for people living with HER2-positive metastatic breast cancer in Ontario.

The Issue:

HER2-positive metastatic breast cancer patients in Ontario who received a treatment called Herceptin when they were first diagnosed and who responded well to initial treatment are being denied access to the treatment should they relapse.

This is happening despite recommendations from Ontario oncologists and clinical evidence included in a report from Cancer Care Ontario, which states that the continued use of Herceptin in combination with chemotherapy is a valid treatment option for those whose breast cancer has progressed on Herceptin.

Even though there is evidence to support Herceptin beyond progression, government funding is not in place in Ontario – one of the only provinces to deny this treatment regimen for HER2-positive metastatic breast cancer patients. The BC Cancer Agency recently approved funding for Herceptin for HER2-positive metastatic breast cancer patients who have been previously treated with it.ii
How can YOU help?

Share your story! If you or someone you know has HER2-positive metastatic breast cancer and are currently being denied Herceptin treatment in Ontario, we want to hear your story. For more information, please contact me directly at 613-230-3044 ext. 221, amacisaac-butler@cbcn.ca

for Rebecca

The memorial for my friend Rebecca is tomorrow. I won't be able to be there but I will be thinking of her all day. Maybe I'll do something silly and fun. I'll eat good food. I might even sing a little off key, in lieu of taking part in the karaoke that's planned for her celebration.

Because I can't be there, I asked my friends to go out and do something fun and dedicate the memory to Rebecca and let me know. Here are some examples of the the fun and the joy that was experienced as a tribute to her:

Maggie sang with her friends and dedicated the happiest song for Rebecca.

Nat danced in her kitchen to a band called “The Drop-Kick Murphys.”

A friend of Rebecca's went to the beach. She also said that Rebecca taught her “alot about about life.”

Jenny decided not to work late and went for a bike ride along the river. She says Rebecca reminded her that “life is a gift.”

Lee Ann said, “I dedicate my wonderful day on Saturday riding the life sized Thomas the Tank Engine with my 3 year old son Noah to your friend Rebecca. Such simple, beautiful kid fun, seeing this wonder through Noah's eyes.”

Lene thought of Rebecca as she took on a new adventure – her first photographic portrait commission.

Rebecca C. went for a swim with her mother in a moonlit pool. She said, “We were tired and could easily have passed on the opportunity, but in the spirit of your request, I urged us on. Gorgeous night, lovely memory, living in the moment. “

Rachel went to the amusement park and got on the “big bad roller coaster that I have been avoiding.”

Blondie wrote Rebecca's name on her hand and took her, in spirit to a big rock concert and to the state fair. She wrote about facing her fears and having on her blog.

Julie Harrison promised to do something that was “pure fun.”

Kate spent her week end at a horse show and “stayed and watched and cheered.” She said it was “great fun” and dedicated her time to Rebecca and all her friends and family with breast cancer.

Jillian spent the day at the beach with her family.

Tish laughed with friends at a party and with her sister at the gym. She dedicated her laughter to Rebecca.

Karin went for a swim on a hot day, “I watched my kids be brave and have a blast: RJ and RM held hands as they dove to the bottom of the deep end, and CJ rocketed down the slide sans life jacket. Floating in the water, I stopped to think of your friend Rebecca.”

Judy went out to dinner at one of her favourite restaurants and had a sour apple martini.

Jeanne went to the beach of her pups, “one of which is a pitbull named 'Denver'.”

Jojo went sailing on a beautiful lake.

Amanda cuddled and played with her puppy. She added, “yesterday as we worked on a swingset for our kids, I romped with him, talking to him about the pine cones he was chomping and chirping at him as he frolicked. It was incredible to really be present with him. As his red collar winked from between his floppy black and white hair, I was reminded of this post and of your wishes in Rebecca’s honor.”

Jill wrote, “I intend to ride my bike to the top of Mt. Montara within the next week, and when I do, I’ll sit on the little bench overlooking the Pacific and say a prayer for your friend, Rebecca, as well as send up some thanks for her gracing the lives of those who loved her. “

Shallowgal “blew off swim practice” and took her boys out for chilli dogs. She toasted Rebecca over her dinner.

Cait had a fun day with her kids and though about Rebecca as she pushed them on the swing.

Sylvia thought of Rebecca as she watched her daughter jump off the diving board for the very first time.

Darcy toasted Rebecca with friends and family as they gathered as a big group at a cottage with lots of good food and fun.

Celeste thought of Rebecca as she took a vacation with good girlfriends.

Michael paddle-whacked a tennis ball into the lake for his wolf-hound cross named Boo. He's sure that Boo would have loved Diezel.

In memory of Rebecca, Frederica went for a bareback ride on her daughter's pony. She writes, “The real fun started when she started trotting: she was going like a bat out of hell, I was popping up and down like a jackhammer trying to post, grinning from ear to ear.”

Andrea promised to have fun with her daughter.

Deb spent an evening knitting and drinking beer with two good friends.

Cathie tickled her girls, hugged them and rolled around on the floor with them.

Allie “stopped by McFatty for a burger and DQ for a strawberry shake.” She added, “Thinking also of Rebecca's family, of Diezel, and of the joy of a scooter and open roads. Thanks Rebecca for the steady example of choosing well, every day.”

And I went to a dog rescue fundraiser called Take the Plunge. We saw dogs pulling scooters, jumping off a dock into a pool, doing agility runs and just generally milling around. I lost count of the different breeds. The highlight was watching a 10.5 year old pit bull sail off a dock and fly through the air, as his owner fist-pumped in triumph.

Rebecca had a big impact on me. I miss her. I send much love to all those who will gather tomorrow in her memory.

go the (bleep) to sleep. and get up earlier.

I live in a house full of night owls. Left to their own devices, my boys and their father would be up half the night and sleep into the late morning (or later, when it comes to my teenager). I think it's genetic, as many members of Tim's family have the same internal clock.

In contrast to them, I'm practically a morning person. However, I feel my most refreshed and energetic when I regularly sleep between the hours of midnight and 8am.

I don't subscribe to the notion that being an early riser is more virtuous but I do admit that it's more practical (especially when trying to get two kids to school on time in the morning), so for the last couple of weeks, we've all been getting up at 7. The first few days it was painful. It's easier now but I can't say that I feel bright eyed and bushy tailed at any point during the day.

I'm tired. And I'm finding that I'm not getting much more done, because I seem to need more sleep to compensate for getting up earlier.

Will it get any easier? Will my body adjust eventually? What's your internal clock like? Have you tried to change it?

(I edited this post as I sat with my 8 year old. It's 9:30 at night and, despite being tired all day, he's suddenly wide awake and full of energy. Please don't suggest a bed-time routine. We have tried it all.)

just slightly below par

On Wednesday morning, I had an appointment with my oncologist. I had confirmed that we would do it over the phone and kept my phone handy to await is his call.

At 11:00, the nurse who works with Dr. G. called to say that I would be hearing him before the end of the afternoon, thus giving me several hours to work myself into a state of high anxiety. I'd had an echocardiogram and two CT scans on August 29 and I knew that my doc would have the results.

I had no reason (other than history) to believe that the CTs would reveal anything bad and I'd managed to pretty much forget about the results until the day I was to receive them. On that day, I became a nervous wreck. I jumped every time the phone rang and when the call I'd been waiting for finally came through at around 5pm, I was a mess.

My oncologist apologized for the delay, and, as always when I hear his voice, my annoyance and anxiety dissolved. He told me that both CTs were fine. I have lots of scarring on my liver (from the cancer) and a little scaring on my lungs (from the radiation) but that there was no sign of cancer anywhere.

Excellent news.

Then I asked about the echo, which surprised Dr. G. He didn't have the results in front of him and had to go look them up. When he did, he sounded a bit taken aback.

My ejection fraction is at 48%. The normal range starts at 55%, so I'm really just below that but it's enough of a concern to send me to a cardiologist and to cancel next week's treatment.

My concern is not that there is permanent heart damage (although it's a bit freaky to think that my poor heart is a bit over-stressed) because Herceptin damage is usually reversible. My fear is the length of time it will take my heart to bounce back and what my treatment options are in the interim. And what if the toxicity has built up to a sufficient level that long term treatment with Herceptin is no longer viable?

This drug has been my magic potion, the one I credit with my remission and the fact that I'm here today. I'm not ready to think about giving it up.

And I don't have to. Not yet. Going to try and save all my questions for the cardiologist and, in the interim, carry on with my happy, busy life.

Update: I have an appointment with a cardio-oncologist on October 3rd.

Cross-posted to Mothers With Cancer.

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

blowing my own horn

Tomorrow, I will have a featured post on BlogHer.

Also, Judy from Just Enjoy Him (and Mothers With Cancer) really liked my book. And she said some very nice things about it. Since I am in awe of Judy, this meant a whole lot to me.

A little praise goes a long way for this girl. I feel like writing more now.

smiling can't cheat death

I'm a reasonably happy person. And I believe that concentrating on the half full part of the glass has helped me to cope with many aspects of my life, including breast cancer. However, there have been times when a good wallow or a raging tantrum have been just as necessary and cathartic.

And I don't, for even a second, think that people who worried too much, or got mad or who didn't have a positive attitude brought cancer or their own deaths upon themselves. Nor do I believe that temperament or attitude is what causes one person to go into remission and another to succumb to the illness. I find the belief system that blames the patient to be repugnant.

In many ways, cancer is a crap shoot. It helps to have excellent medical care, good nutrition and the resources that help you cope with the disease and the treatments' side effects. But luck plays a big role in survival as well.

I've been thinking about this lately, and so it appears have other women. Yesterday, I stumbled on a great post at Uneasy Pink, by Katie, who, in turn, pointed the way to Coco, guest-posting at Journeying Beyond Breast Cancer. These women really tell it like it is.

Last week, Canada lost Jack Layton, a leader who was, by all accounts active, optimistic and happy. And we lost him way too young. Many media reports used the common phrase "lost his battle with cancer." Jack didn't lose a battle - there was no failure on his part - he got cancer and died. No amount of positive thinking could have changed that.

(Shout out to my friend Sharon, who first used the phrase "tyranny of positive thinking" in my presence. She has kindred spirits out there, too).

Cross-posted to Mothers With Cancer.

grateful through my tears

"My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world." - Hon. Jack Layton (1950-2011)