Wednesday, December 14, 2011

in other news

My children are still very beautiful.





(photos: Mary Anne Folckomer Register)

Monday, December 12, 2011

not imaginary

It's a running joke in my house, "Mama's talking to her imaginary friends." They're the people I've met online over the last few years, through blogging and various social networks. Of course they are very real people and when bad things happen to them, I do feel it keenly.


S., though, was someone I met in person - at the Conference for Younger Women Affected by Breast Cancer in early 2009 - and with whom I continued to connect online. We first connected because we both had metastatic breast cancer but soon realized that we had much more than the cancer in common - a progressive outlook, quirky gifted children and we both chose to expressive ourselves in creative ways. Unlike me, though, S. was a bona fide artist who used fabric as her medium.


S. was about my age. She had been diagnosed at Stage 0 but the cancer seemed to have quickly metastasized (was it just very aggressive or had something been missed? This was one of the things we discussed over dinner on the evening we met). We ended up spending all of our free time together, during that long week end in Atlanta - every coffee break, meal and evening. We even grabbed lunch together before grabbing our shuttle to the airport.


We stayed in touch after we got home, exchanging the occasional email and through the Care Pages that S. set up to share news with family and friends. She wrote to me about her latest art project (which integrated images of cancer cells), her daily life and a wonderful trip that her family took to Costa Rica. She also shared her frustration with the fact that no treatments seemed to slow the progression of her cancer.


Last week, I received a notice that S.'s Care Page had been updated. I logged in and found a message from her husband: saying S. had had moved from treatment to hospice care. Yesterday, he contacted us to say that this remarkable woman had passed away in her sleep.


I've run out of words to describe my sadness and the grief I feel on behalf of her family. Another child has lost her mother. It's all so wrong.


Over the week end, Zoom remarked that having cancer brings a lot of people into your life but takes a lot of them out, too. And, the truth is, I would do nothing differently, even knowing I would face loss and be forced to confront the possibility of my own death. The people who have come into my life - online and off- since my cancer diagnosis have improved my life immeasurably. I wouldn't trade that for anything.


But, right now, my heart is aching.





Saturday, December 10, 2011

Judy

I'm sure she did not "go gently into that good night." 


Judy was a fighter, a woman whose Facebook page stated "I love my life." And that was life centered around her family and friends, especially her 10 year old son and her husband.


I first met Judy (and I do feel like I knew her, even though we never met in person) when 20 or so women were brought together by Susan to form the group blog, Mothers With Cancer. It was clear from the outset that Judy  would become a particular friend.


She had a passionate sense of social justice, a dark sense of humour and a straightforward manner that endeared her to me immediately. Like me, she loathed the pinkwashing that takes place every October. We even both had dogs who were considered part of the family.


Judy never stopped being angry about cancer. She railed against the unfairness of a world that afflicts so many of us with this evil disease.


At the same time, she never stopped appreciating the beauty in the world around her - in her environment, at work and in her family and friends. She never stopped finding things about which to laugh.


It's because of Judy that I applied for Little Pink Houses. I know that her family's week with the organization was a glorious experience (and so was mine). We often said how great it would be to meet up in person. Jeanine from Pink Houses did meet both of us and told me she is confident that we would have liked each other as much in person as we did online.


Judy, my friend, I miss you already. My heart goes out to everyone who loves you, especially Nate and Frank. Many, many, many people mourn your loss and celebrate your life.

Wednesday, December 07, 2011

Deanna: a tribute



Brilliant.


Funny.


Committed.


Accomplished.


Artistic.


Strong.


Insightful.


Perceptive.


Inclusive.


Accepting.


Activist.


Loving mother, daughter, sister, friend.


I struggle for the words to write you the tribute you deserve. You are loved, admired and missed by so many.


My heart goes out to your family. I will hold you in my heart forever and continue to be inspired by you every day.


http://deeupdates.blogspot.com/


Thursday, November 24, 2011

open letter to vendors who participate in group-buy programs

Dear Vendors,

I love group-buy deals (those you offer through Living Social, Dealfind, Groupon, Koopon, etc.) but I don't love them as much as I did a few months ago. I've had a few experiences that have turned me off group-buying and made me dislike some of the vendors who have chosen to participate.

Here's my unsolicited advice for any vendors contemplating participating in a group buy opportunity:

Don't act resentful, frustrated or even surprised when I call to cash in on my voucher. You may be regretting your decision to participate or overwhelmed with the response but that's not my fault. And if the point of selling these things is to introduce me to your business, then making me feel like my call is unwelcome is not the way to start our relationship.

Don't complain about the low price you set for your voucher. It makes me feel like you're accusing me of pulling a fast one or trying to rip you off.

Don't sell more vouchers than you can accommodate in a timely fashion. I bought a voucher for house cleaning in early October - but the earliest they can come is January 17, 2012. I'm pissed off and our relationship has yet to begin!

Don't add on additional fees that are not mentioned in the voucher. It's not cool to make me pay a "sign up fee" or tell me that the group-buy people "forgot to account for taxes."

Don't treat voucher clients like second class citizens. Unless you've stated this clearly on the voucher, I shouldn't have to wait outside your class/restaurant/spa to make sure that all those who've paid the full freight have been served first and then get whatever is left over.

The goal of participating in the group-buy process should be to attract new customers - ones who will keep coming back. If the voucher experience isn't a positive one for everyone who buys in, then the vendor has indeed wasted time and money.

I know that the group-buy companies engage in some pretty hard sell strategies (I once sat in a cafe and listened to the owner say 'no' several times, in several ways to a group-buy salesperson) but if you've leapt, you might as well make the best of it.

I've had three group-buy experiences so far that have been delightful. Two were with restaurants (Foolish Chicken and Kinki) and one was with a local yarn store (Wabi Sabi). I was already a fan of the chicken place but this just reinforced my loyalty (and I bring lots of others with me). I'd not been to Kinki for years but the experience was so lovely that I'll go again (and again). And the owner of Wabi Sabi was so incredibly helpful and gracious that they've won me over (and I've been telling everyone else to go, too). Those vendors could give lessons to some of the rest of you.

So, vendors, think before you sign up with the group-buy people. And if you decide to participate, be gracious, organized, responsive, welcoming and fair. Don't make me regret having bought what you're selling.

Very sincerely,

a potential customer




Canada Reads 2012

The top five Canada Reads 2012 books were revealed yesterday, as well as the five Canadians who will advocate on their behalf.

Despite my frustrations with how things went down last year and my initial resistance to an all non-fiction Canada Reads, I'm excited. 

The books look interesting and their defenders seem passionate. And almost as diverse as Canadians can be.

I really enjoyed reading last year's book choices. It was the actual debates that set my teeth on edge. If I had been one of the authors of last year's books, I would have been very disappointed in the quality of discussion (except for Sara Quin defending Essex County - she was wonderful). The conversations were generally at the level of a school yard taunts ("Oh yeah! Well I'm going to vote against your book because you didn't like mine!" "I didn't even finish reading your book but I'm going to tear it down anyway!"). There was so little discussion about the actual content of any of the books. How is it that the Canada Reads debates made me less interested in novels I had already read and enjoyed?

But that was last year.

The best part of Canada Reads in any year is reading the books. It's also the biggest commitment. And I've decided to do it.

Will you join me?


The Game by Ken Dryden (defended by Allan Thicke)

On a Cold Road by Dave Bidini (defended by Stacey McKenzie)

Prisoner of Tehran by Marina Nemat (defended by Arlene Dickenson)

Something Fierce by Carmen Aguirre (defended by Shad)

The Tiger by John Vaillant (defended by Anne-France Goldwater)


Wednesday, November 23, 2011

i don't understand

The Canadian Task Force on Preventative Health Care has released new guidelines for breast cancer screening. Among other things they have recommended that women under the age of 50 with an "average risk of breast cancer" not be referred for regular mammograms. Women over 50 would only get mammograms every 2-3 years (as opposed to every year). They also advise against regular breast exams and self-examination.

I don't understand.

On their web site, the Task Force gives no reasons for these guideline changes but I have heard several interviews on the radio and the main arguments seem to be that mammograms generate too many false positives, submitting many women to uneccessary biopsies and other intervention. 

There must be more to this. I have to be missing something. I have witnessed the trauma and fear that false postives inflict on the women and their families who live through it. However, I don't think it's as bad as the trauma of being diagnosed at Stage 4 because breast cancer was not caught at an earlier stage. And breast cancer in younger women, is often more aggressive.

Is there a part of this story that I'm missing? Task Force spokespeople insist that the new guidelines were not influenced by the desire to conserve resources. Really? Colour me skeptical.

The Canadian Breast Cancer Foundation released a statement yesterday in support of regular mammography and critical of the new Task Force guidelines:

“The fact is scientific evidence demonstrates that earlier detection and diagnosis can save lives among women 40-49 by at least 25%,” said Sandra Palmaro, CEO, Canadian Breast Cancer Foundation – Ontario Region.

Palmaro added that screening can help find cancers that are smaller and haven’t spread, which can allow for better treatment options and reduced disability and death from breast cancer. Breast cancer continues to be the most frequently diagnosed cancer among Canadian women.
 One of CBCF’s most significant concerns about the Task Force report is that it relied heavily on old data from “randomized controlled trials” (RCT’s) related to breast cancer screening and mammography, some of which are 25 – 40 years old and were based on equipment that is now outdated. There has been an enormous change in breast imaging since that time, including significant improvements to analog technology, and the continued adoption of digital mammography across Canada. Digital mammography has been shown to increase accuracy in younger women pre and perimenopausal women, and women with dense breasts, the group the Task Force recommends be excluded.
This sounds pretty convincing to me. Your thoughts?


Wednesday, November 16, 2011

it is what it is (and what it is is ok)

Herceptin makes me feel lousy. Or maybe it's the Demerol they give me from flopping around like a fish with a fever. Either way, after every treatment I feel achy and hungover for a couple of days.

It's a not nearly as bad as when I also have chemo (and I bounce back more quickly) but I'm still really dragging my butt around, when I bother to get up at all. I'll go for a walk later but it will take every ounce of the meager willpower I possess to get myself dressed and out the door.

I saw the cardio-oncologist again on Monday and that appointment went as well as could possibly be imagined. My heart was slightly damaged by the Adriamycin but has remained just below normal, since being on the Herceptin. The verdict: I can continue with Herceptin. I don't need to have heart scans every three months, as I have been. I don't even need to be followed by a cardio-oncologist unless my ejection fraction dips below 45 (it's currently around 49) or I experience symptoms of heart failure (um, yeah).

It appears that this whole heart scare was a tempest in a teapot - a reminder that when it comes to treatment of women living with metastasis, doctors are just making stuff up as they go along. They really don't know the long term effects of the drugs that keep us alive because our being alive and in remission is still so unusual. It's a bit unnerving but, given the alternative, I'm happy to serve as a human guinea pig.

Cross-posted to Mothers With Cancer

Monday, November 14, 2011

what i did on my november vacation

We just got back last night from our post Little Pink Houses of Hope road trip and I'm just too tired to put together very many coherent sentences. I'll write more later this week but I wanted to tell you all that my family had unbelievably fabulous time in Myrtle Beach.

Here are just some of the things I did:


Discovered real fried chicken and North and South Carolina barbecue and banana pudding.


Gained four pounds.

Spent time in the sun on the beach, walking, playing and just sitting around.

Enjoyed the glorious weather.

Learned how to hula dance and watched a man swallow fire.

Read 575 pages of a book and still have 1000 to go.

Went fishing without touching a pole and had a glorious time.


Blew off NaBloPoMo. I was having to good a time to waste it hunting down wifi.

Went to a concert with celebrity look-alikes who weren't dressed in drag.


Dressed up to have my photo taken.


Learned that southern hospitality is a wonderful thing.

Met many wonderful people.

Enjoyed my beautiful family.



Went for walks by myself.

Relaxed, unwound and chilled out.

Felt supported, cared for, spoiled and restored.


I am so grateful to Jeanine, Melissa and all the wonderful volunteers, donors and families who make Little Pink Houses of Hope such a wonderful experience.


Tuesday, November 08, 2011

taking stock

(from Myrtle Beach, South Carolina)

16 hours of driving

31 hours on the road

countless new people

4 bedrooms, 3 baths

2 happy kids

1 bad sunburn

immeasurable kindness.

Monday, November 07, 2011

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.”

Sunday, November 06, 2011

off the top of my head and maybe out of my mind

Last spring, I shared a bit of tabloid inspired writing about a mother who is revolted by her own child that I'd done as homework for a class I was taking. A few days after I wrote that piece, we did an in class excercise, starting with the prompt, "It was a strange creature and it was looking right at me." How could I not be reminded of my bat boy? I wrote this by hand and in ten minutes but I think it's kind of fun.

I love the inspiration and motivation that comes from being part of a writing group. I miss it.
It was a strange creature and it was looking right at me. Someone had called to say they'd seen a strange looking man hanging out by Berit's Cave. No one thought much of it, until some smart young deputy mentioned the report that had crossed my desk the day before. The missing boy from up North. He'd stolen a car and not been heard from since. The thing was that the car was expensive but that was not what had folks all riled up. What really mattered was what had been inside the trunk of the car – a brief case full of cash. The had likely not known the bonus he was acquiring when he stole that car but he had stolen it and the folks in Maryland were very keen to get it back. And they'd said the boy was odd-looking, too.

Odd-looking. Funny-looking. Those expressions did not do justice to the creature that stood before me. At first glance, I thought I was seeing a monster. When rational thought returned, I saw that I was looking at a young man – a boy really – whose features looked disconcertingly like those of a bat. He had pointy ears, tiny eyes, a pushed in nose and his teeth – I saw them when he opened his mouth to yell at me – were small and sharp, as though the owner had filed them to a point. Not to put too fine a point on it, the kid was hideous.

I started to ask who he was and about the stolen car when he charged at me, head lowered like a battering ram. He wasn't very big but the attack and the accompanying ear splitting scream caught me by surprise. Before I could react, I had fallen ass over tea kettle and the boy was on the run. It took a second to regain my composure – was it only a second? Before I called for back up. I told 'em to send for the young deputy – I hoped his feet would be as fast as his mouth.

I didn't want to chase the boy. It wasn't really my bad leg – the excuse I gave to my sheriff. The fact was, the boy had really freaked me out. It wasn't just that he was ugly – although he was that – but it was the eyes that had scared me the most. There was no soul there. When I looked at him, all I saw was emptiness reflected back at me.
I wish I'd thought of sharing this on Hallowe'en. I wonder if there's more writing my bat boy can inspire.

Saturday, November 05, 2011

outside the zone

In the nearly six years since my initial breast cancer diagnosis, I have become increasingly introverted. As a child, I was pretty outgoing. However, later in my teens and throughout adulthood I have developed a form of social anxiety that makes it easier to address a crowd of hundreds than to speak to a handful of new people at a social gathering.

I come by it honestly - anxiety disorders run in my family - but the structure of my day to day life hasn't helped. When I was going to an office every day, I had to interact with co-workers and new people every day - and (mostly) I enjoyed it.

I've always liked spending time on my own but these years of introspection have made it seem like more of a hurdle to confront social anxiety. I have a busy social life but I choose to spend time mostly with trusted friends, going places that are familiar to me.

I don't think there's too much wrong with that but I have seen how fears can make one's world smaller and deprive us of experiences that we might enjoy or, at the very least, that can teach or inspire us. I talk to my kids a lot about how everyone needs to strike a balance between doing things we know that we love and undertaking new challenges - about how confronting our fears is often the only way to make sure that our fears do not come to control our lives.

This year, I've been very inspired by my friend Andrea, who has taken it upon herself to do many things that take her outside her personal comfort zone. While she's danced and travelled and taken on public speaking, I've attended a conference, taken a job as an Elections Ontario officer for a day and now - my family is heading on an entirely new adventure.

This morning, we are pointing the car towards Myrtle Beach, South Carolina, on our way to take part in a week-long family vacation hosted by Little Pink Houses of Hope. We will be joined by 13 other families and every mother in the group will have been treated for breast cancer. The only mandatory group activities will be dinner on the first night and the last. In between, we will be in our own beach house and all group meals and activities (in the past, these have ranged from jewelry making to hang-gliding) during the week are optional. I'm very grateful for the opportunity and the generosity of the organizers but I'm also freaked right out.

It's going to be an experience. And, as Susan (aka the Bubbster) pointed out to me in an email, "The trip sounds wonderful and you'll all 'dine out' on the vacation for years to come. They'll be happy and funny stories, I know." 

In other words, great blog fodder. And most definitely, an interesting experience.

Friday, November 04, 2011

Movember Man

Does it seem to you like there are a lot of men in your neighbourhood sporting really bad facial hair? You're not imagining things. It's Movember!

All this hairyness is happening for a really good cause - to bring an end to prostate cancer. This is a fundraiser/awareness campaign that I like very much. It amuses me, no one needs to buy some carcinogenic/useless/environmentally unfriendly product to participate and we are all reminded of the cause every time we look at a man and wonder "Is he or isn't he?"

If you know a man who's participating in Movember, please support him. If you don't, please support my friend Ken. He and I go way back (more than 20 years - gulp). He is a Good Man - funny, kind and with a generous heart. He really deserves your support. Besides, he's being very brave. The last time he sported a moustache was a very long time ago and it was a little - well - scraggly. Many men's beards improve greatly over the decades (Tim's certainly has) but, as Ken sets out on this adventure, he just doesn't know how it's going to go.

I've already donated. It was a selfish act really. I want him to post photos.

All funds raised in Canada during Movember go to Prostate Cancer Canada, awareness and education programs and towards a Global Action Plan to eradicate prostate cancer worldwide. I can get behind that. Will you?

Thursday, November 03, 2011

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.

Wednesday, November 02, 2011

back at it

NaBloPoMo 2011

I've decided to participate in National Blog Posting Month (or NaBloPoMo) this year, after a two year hiatus (in 2009 I did NaNoWriMo instead and last year, I just didn't feel like it). Let's hope it brings inspiration and a renewed commitment to regular writing.

I'll be accepting suggestions for blogging topics. If previous years are any indication, expect this month's content to be pretty eclectic.

Tuesday, November 01, 2011

wishing for a dreamless sleep

I'm about to hit the hay. I've been plagued by wild dreams of late and I'm hoping tonight's sleep will be deep and dreamless.

No discovering that I've not graduated from high school.

No returning to live with my parents while I complete school.

No wandering the halls unsure where I'm supposed to go and unable to find the office or a time-table.

No discovering I'm way, way hopelessly behind.

No finding myself responsible for other people's babies.

No getting my stomach pumped.

No crawling into bed, only to discover that I've let myself into a stranger's home and I'm under the covers of their guest bed in their living room.

No mowing the same stranger's giant lawn under a blinding hot sun.

No dead dogs on the lawn.

No horrible hair cuts.

Just sweet, dreamless sleep. 

Wish me luck.

Monday, October 31, 2011

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 weather forecast?

What is fracking?

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



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?




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).



Friday, October 21, 2011

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.

Thursday, October 20, 2011

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.

Wednesday, October 19, 2011

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.

Tuesday, October 18, 2011

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.

Monday, October 17, 2011

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


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.

Friday, October 14, 2011

"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.

Thursday, October 13, 2011

please be aware


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:










Delaney

Kristina


Susannah


And we remember:












Renee

Wednesday, October 05, 2011

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.

"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.

Tuesday, October 04, 2011

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.