Wednesday, September 21, 2011

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.

Tuesday, September 20, 2011

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However, should I have any kind of relapse, funding for Herceptin will be withdrawn, despite the fact that studies show that switching up treatment regimens (pairing another drug with Herceptin) can give good results.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

Friday, September 16, 2011

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.

Thursday, September 15, 2011

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.)

Friday, September 09, 2011

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.

Thursday, September 08, 2011

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

Ta-tas® Brand
Laughter Heals®
Save the Ta-tas Foundation

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,


Tuesday, September 06, 2011

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.

Thursday, September 01, 2011

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.