giving in to the monkey brain

Herceptin

I think I'm happy with the outcome of the brouhaha over Herceptin in Ontario. For those of you outside the province or outside the loop. Jill Anzarut, a 35 year old woman undergoing treatment for breast cancer made the news last week when she announced that the province had to pay for Herceptin because her Her2+ tumour was less than one centimetre (that's about 1/4 inch) in diameter.

The province initially refused to budge but eventually caved after a massive campaign played out in the social and traditional media. Access to Herceptin will now much more room for discretion when it comes to providing access to the drug.

I feel good about this. It's not that I think that every drug should be funded for every person. Her2+ cancers are very aggressive and, as best put by Stephen Chia, chair of the British Columbia breast-tumour group, “In HER-2 positive cancers, it’s not the size that drives it; it’s the HER-2 gene that drives it.” 

Election

Canadians are once again going to the polls. I am not happy about this. 

I'm sad that the long overdue Bill C-389 protecting the rights of transgendered people will die before it gets the chance to be thrown out by the Senate.

I'm worried that we will end up with a Conservative majority.

I have election fatigue. There was a time in my life when an election would make me feel excited and hopeful. Now I just think, "Ugh."

Presents in the mail

Did you see my scrabble pendant in yesterday's post? My friend Leslie sent it to me after I told her I'd like to have on with my initial on it. It made me very happy to open the envelope that held my surprise.

The bad with the good

Last week, I received my author's copy of the current issue of Canadian Woman Studies. The theme this quarter is Women and Cancer and I have a poem that is part of a piece called "Seven Reflections on Breast Cancer by Seven Women Who Worked Together." I'm happy about that.

I'm far less happy about another piece I stumbled on when I was leafing through the issue. It's called "The Private/Public Split in Breast Cancer Memoirs." It was written by a woman who came to my book launch in Toronto and asked for permission to speak in order to seek contributions - something to which I readily agreed. She also asked me to contribute to the issue, which prompted me to reach out to my writing group.

I had no idea that she planned to write a scathing deconstruction of my book - but that's what she did. I know that all writers get bad reviews but I found her comments to be very critical of me as a person (I guess you can't seperate the analysis of a memoir from its author) and quite unfair. 

I'm sure how to respond or react, or whether I should do so at all. I've actually been unable to finish reading the article. With a distinct lack of maturity, I threw the journal onto the living room floor and it stayed there for several days. I only just picked it up, in order to write this post.

I'll let you know what I decide to do. Meanwhile, I'm pasting my very own contribution below. It's a very small part of a greater whole (and not the strongest piece by the seven of us by any stretch) but it's mine and, like all my writing, expresses a little bit of what has been in my heart.

Snap shots

December 2^nd, 2005.

When I close my eyes, I see myself as I was then.

Short dark hair and boots with heels.

Irritable and excited in equal measure.

I knew big change was coming. And it did. But it was not what I expected.

I was getting undressed when I found the lump.

July 1^st, 2006

I close my eyes and see myself as I was then.

Round, bald and bloated. But happy.

Chemo is behind me. Or so I expect.

I am self-conscious but also hungry.

I eat two burgers at the barbecue.

December 24^th, 2006

I close my eyes and see myself as I was.

I rallied for Christmas Eve but in the end the pain got the best of me.

My liver was riddled with tumours. And I had waited too long for the morphine.

My mother had to put me to bed. That comforted me.

And so did the drugs.

June 25^th, 2007

I close my eyes and I can taste

The strawberries on my tongue

The sensual pleasure of the whipped cream

And the Niagara ice wine as it slid down my throat.

I knew I would soon have something to celebrate.

December 16^th, 2009

I close my eyes so I can think.

I have now been in remission for 30 months.

And I will be in treatment for the rest of my life.

Some days I wake up celebrating.

Some days I grieve for what I have lost.

Today is a sad day.

Tomorrow will be better. Or maybe the day after that.

why i love twitter

People often ask what it is I love about Twitter. I tell them how useful it is to get advice and share information - about resources, local business, good things to read, etc. I also love the quick exchanges of ideas, the wit and the humour.

Twitter is fun.

And last week, I found a new reason to love Twitter. Trading. Check out the two exchanges below in which I gained a Canada Reads book from the author and the best quiche that I've ever eaten. Read each conversation from the bottom up (sorry it's so small and blurry - click on each image to make it larger and much easier to read).

Postcript: When I couldn't figure out how to capture and embed Twitter conversations, I turned to Twitter for help. I got several great responses and, in the end a friend who I met via LibraryThing and got to know on Twitter, actually the capturing forming and sent it to me as an email.

The blurriness is my fault but it's thanks to her I got it done.

I love social media.

this is kind of nice

TopOnlineColleges.com as included Not Just About Cancer in their list of "15 Inspiring Breast Cancer Blogs."

Get inspired by this breast cancer survivor, who turned her unfortunate situation into a book about defying the odds and beating cancer.

Pretty cool, no? It's nice to know that someone's reading and finding resonance in my words. As for the "beating cancer" part - I know it lurks there somewhere and that we who have gone to Stage 4 are never, ever out of the woods but I do like to think I'm beating it.

mind body spirit

Thanks to Andrea for the photo.

I just spent an inspiring (and I don't use that word lightly) week end at Body, Mind, Spirit, 2010: National Conference for Young Women Living with Breast Cancer.

My best parts:

A Friday afternoon workshop: "Take charge of Your Treatment for Women with Metastatic Breast Cancer" with Dr. Maureen Trudeau. Engaging, accessible, interesting, informative and hopeful.

A Saturday afternoon workshop: "Intimacy after Cancer: Rekindling the Flame" with Dr. Sally Kydd. Amusing, motivating, reassuring, helpful and just plain fun.

A Sunday morning workshop: "Living with Metastatic Breast Cancer. Support that Works" with Dr. Tzeporah Cohen. Emotional,moving, cathartic, uniting, strengthening.

Speakers who resonated: Deborah Dubenofsky (Ontario Region Board Chair, Canadian Breast Cancer Foundation) and Carol Ann Cole.

My takeaway message (from Dr. Natasha Zajmalowski, Dr. Rob Rutledge, Dr. Roanne Segal and others)-

When it comes to breast cancer recurrence, it appears that insulin is the root of all evil. Lowering insulin levels improves the odds for a long and healthy life. How to do this:

1. Get at least thirty-five minutes of moderate exercise every day. Hooray! Something I'm already doing right!

2. Maintain a healthy body weight. This has provided the kick in the pants to re-commit to dropping 44lbs by my 44th birthday. Weighing too little isn't good either but that's never been my problem.

3. Eliminate or reduce alcohol and sugar. The insulin explanation is the first one I've understood and accepted re the link between these yummy things and cancer recurrence. To be truthful, not being an "all or nothing" kind of person, I don't see myself promising to never consume booze or sweets again. I can't even say that I haven't partaken since the conference, this being the season of Hallowe'en and pumpkin ale. I can say that I will make a greater effort to hold out for the good stuff and not give in to cravings.

I'm happy to say that although this message was consistent, the speakers seemed to be devoid of judgment. No one was blaming the victim or telling cancer patients that they brought the cancer on themselves.

I still feel that there are greater environmental and medical issues that need to be addressed. But there are just so few things we can control as cancer patients that I appreciate straightforward advice and simple things I can do to increase my odds of being around to see my children grow up.

Thank you so much to the staff (especially Jenn McNeill of the CBCN) and volunteers (especially Andrew, a volunteer from Humber college who helped with my books, kept me company and was enormously supportive during and after my book signing) at the Canadian Breast Cancer Network and the Canadian Breast Cancer Foundation for helping me to promote Not Done Yet, and especially for organizing an amazing conference.

Can we do it again next year, please?

haven't done this in a while

Haven't blown my own horn in at least a few weeks.

Alysa, who I met last year when she ran a wonderful workshop on writing your way through breast cancer (at the Living Beyond Breast Cancer conference for women living with metastatic breast cancer). I introduced myself and gave her my book.

Yesterday, Alysa emailed me to say that she'd written a review of my book for oncolink and that she thought it would make me smile.

It did.

happy news

I'm in Toronto for March Break and having a lovely time and have been online only intermittently. Yesterday afternoon, though, I got some surprising news that I wanted to share.

I found out yesterday that Not Done Yet is a finalist in the ForeWord Reviews 2009 Book of the Year Awards in the "autobiography/memoir" category.

"The finalists, representing 360 publishers, were selected from 1,400 entries in 60 categories. These books are examples of independent publishing at its best...

...ForeWord's Book of the Year Awards program was designed to discover distinctive books from independent publishers across a number of genres."

I feel very, very proud.

survivors' review

I have a guest post up at Survivors' Review, a wonderful blog that "encourages the creative expression of cancer survivors."

My piece, which is in the section called "Write Now!" is about my take on the importance of writing for cancer survivors and includes a few of my favourite (and completely unoriginal) writing prompts. And, I have to admit, that when I look at the list on the bottom of the page of former contributors to the column, I am tickled, well - tickled pink, I guess.

My book also tops the list in the Resources section of the Review.

I feel good about this. It's a nice thing to have happen at the end of a hard week.

writing your way through breast cancer

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

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

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

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

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

worth 1,000 words

launching

I'm off to Toronto today to celebrate my book! If you're in town, come see me at the Toronto Women's Bookstore.

We'll have a little nosh, a little drink, I'll read from the book...I think it will be a nice evening.

Meanwhile, here's a link to a blog called "Incredible Women," where I am honoured to say that I am being featured today.

de-bunking the pink

"Three years ago, I saw a story on the news while I was at the gym. An investigative feature on the breast cancer awareness contributions that various corporations pledged during Breast Cancer Awareness Month found that most of these promotions led to increased sales and windfall profits that dwarfed the piddling donations that the extra sales generated. Until that moment, I was gung-ho about buying products marked with pink ribbons."

And so begins the best article I have ever read on the subject of the pink-washing of October (and not just because the author says you should all go out and buy my book). Suzanne Reisman hits all the bases in this piece and does it with eloquence and a sense of humour.

If you have ever struggled to understand why some of us object to pinxploitation (I just made that word up), your questions will be answered.

advice (with the benefit of hindsight)

Last week, the Centretown Buzz (an Ottawa community paper) asked me to write the article that "I wish I could have read when I was first diagnosed."



It's on the front page of this week's issue, and begins like this:

On December 1^st, 2005, I found a lump in my breast, as I was getting undressed. One month later, I was diagnosed with breast cancer. I was 38 years old, with two young kids and a very hectic life. I felt completely blind-sided.

Almost four years later, and with the benefit of hindsight, I share some advice for others who find themselves in my situation.

As I looked back on the last few years, the following key points best summarize my advice:

Bring someone with you to appointments, especially in the beginning.

Be your own advocate.

Be nice to the admin staff and nurses.

Don’t compare yourself to anyone else.

Let others help you.

Never give up hope.

The entire article is online, so you can read it for yourself.



Let me know what you think. And if you've been there, please don't hesitate to share some of your hard-earned experience.

will you be there?

Just a reminder to anyone who lives in Toronto or anywhere nearby or who would like to visit Toronto that my book party (postponed in June because of the flu) has been re-scheduled for October 22, from 7-9 pm.

I have been washing my hands lots and lots so that this overdue celebration can happen.


Also, I have been getting lots of interesting comments and messages in answer to my post on internet community. It's not too late to jump into the discussion.

random book

Last week, I saw my book on the shelf at Chapters. I had walked in the back door of the store on Rideau Street, which leads straight into the health section. And there it was - or rather there they were. Three copies of my book just sitting on a shelf in a book store. It was a thrill to see it there. I had to call my spouse right away to tell him.

I had to go back to the same Chapters three days later (I had left my glasses in the store). I couldn't help going back to visit my book. There were only two copies left! They had sold one! I took a couple of steps away and then went back to pull a copy out so that the title page faced towards the front.

My heart still belongs to independent book stores, though. They are owned by booklovers, have knowledgeable staff and are the most supportive of writers. If you can buy my book through your local independent, I strongly encourage it. And if your local bookstore carries my book, let me know. I'll put their logo and a link in my sidebar.

I am quoted in a recent BlogHer article by web teacher Virginia DeBolt. Her post, "Self-Promote Your Book Using The Internet" has some really interesting ideas. I had never thought of doing a book trailer, for example. Of course, I still need to write content for the book's web site.

I also want to remind those of you in Toronto that the Not Done Yet launch will take place at the Toronto Women's Bookstore (73 Harbord, near Spadina) on October 22 from 7-9pm.

"what's wrong with breast cancer awareness month?"

"October is breast cancer awareness month, which again fills the stores with pink products and pink ribbons. But many people with breast cancer are feeling exploited."

It's only September 30th and I already have pink ribbon fatigue. I ranted about about this in 2006, 2007 and 2008 (there is also a version of this rant in my book, Not Done Yet).

This year, let me point you to an excellent article by Maija Haavisto (and I don't just say this because she quotes me):

Since 1985 October has been celebrated as breast cancer awareness month, often symbolized by pink ribbons and the color pink. It is interesting to note that the awareness month was started by the drug company AstraZeneca (which manufactures several breast cancer drugs) and the pink ribbon originated from cosmetics giant Estée Lauder.

Simply put, I think a lot of breast cancer awareness month is big scam. To quote Maija's article quoting me (is this as po-mo as it gets?):

"I really resent big corporations making a profit - while donating only a tiny percentage to breast cancer research - on some disposable item that has been made under questionable environmental conditions by workers who are paid less than a living wage."

Want to do something to raise breast cancer awareness? Make a donation to an organization doing good work. Advocate for changes in environmental laws. Encourage young people to be aware of changes in their bodies. Do something nice for someone who has been affected by the disease.

And if you are craving a slice of pink cake, washed down with a glass of pink lemonade, by all means, indulge yourself. Just please don't do it in my name.

talking "not done yet."

I'm going to be on BlogTalk radio tomorrow!

The show: Lovebabz Lovetalk.

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

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

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

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

toronto book party (take 2)

If you live near Toronto or have plans to be around, I look forward to seeing you there!

(the flu is not going to get me this time).

back to the book

And yes, that's 'book.' Singular. As in, Not Done Yet: Living Through Breast Cancer. I haven't talked about it in a while (I burned myself out and I'm sure that you all were pretty bored with all the self-promotion) but fall brings fresh starts, renewed energy and a willingness to get back to work (or something like that).

Are you like me, in that you still find the return to school feels like the beginning of a new year (whether or not you have kids) and brings with it the impulse to make resolutions (or re-commit to those made in January that have long since been abandoned)? And to buy school related things? And read more?

How about buying a book?

I have been informed that Chapters/Indigo now has a bunch of copies in stock, so that you don't have to wait weeks when you order online. This also means that, if your local Chapters/Indigo does not carry the book, you can ask them to get it in for you. And if the books they have ordered sell well, they'll order in more.

However, I continue to have a deep and abiding love for independent bookstores. This feeling has only deepened since become an author with a small Canadian publishing company. The indies have been the most supportive and by far the easiest to deal with. Octopus Books, here in Ottawa, hosted my book launch. Collected Works also carries the book. Please support your local independent book store.

If you know of a local, independent book store that is carrying my book let me know. I'll contact them and see if they want their logo (with a link) added to the sidebar of my blog.

And of course, you can still by the book through Women's Press.

Finally, I have about a dozen copies of the book that I will happily sell. I charge the price of the book plus the exact amount of postage that it costs me. You can order via my nifty pay pal button or by sending me an email (notdoneyet at kingston-wayne dot ca).

all good things

Today is a pretty emotional day for my little family.

Tomorrow, my youngest, will start Grade One at a new school. While that's a pretty big deal in and of itself (at least it's the same school his big brother attends), this also marks his last day at the day care housed in his old school.

My family has been involved (except for a few years between kids and when D. was in home care), with the Glebe Parents' Day Care since 1999, when S. was a toddler. It's a great day care but the staff at their First Avenue program are truly exceptional.

When S. was "emergency airlifted" out of First Avenue in Grade One, they re-opened the day care an hour early so that staff could meet him at the bus (his temporary school was further away and the school day ended earlier) for the rest of the term (from February until June).

And, earlier this year, when I needed a space to launch my book, the staff offered their wonderful facility free of charge. They decorated it so beautifully and there was even a message on a chalkboard in the washroom telling me how proud they were of me.

And those are just a couple of examples.

This past week end, D. and I made a poster-sized card with a photo of our family. We all signed it. We also made cookies (I burned the first two batches, my spouse did the baking of the last couple, as I was becoming hysterical). We also gave them a bottle of gourmet chocolate sauce to pour in their coffee.

D. and I made cards for the three teachers who hosted the book launch. I want to make scarves for all three of them but of course, only one was finished. D. had me paste photos of the scarves in the cards for the other two, so that they would know what they are getting (I made a "Lace Ribbon" scarf for J., T. is getting a "Clapotis" and, if I can manage the pattern, I want to make "Juno" for A.)

I had T. and D. deliver it all to the day care, confessing to my spouse that I am "emotional coward." Apparently, the staff and T. have decided that I am not to be let off the hook, though, so S. and I will join T. when he goes to collect D. at the day care this evening.

There might be tears.

These photos were taken first thing this am and are thus not particularly flattering. I just wanted a photographic record.

To distract myself this, I thought I'd do this nifty little book meme that Sassymonkey wrote about at BlogHer:

"Using only books you have read this year (2009), answer these
questions. Try not to repeat a book title. It’s a lot harder than you
think!

Here's the meme with my answers. If you haven't read enough books so far this year to answer all the questions go back as far as you need to get enough books. If you've played it on your blog leave a link so I can go visit."

I was planning to do it even before I noticed that Sassymonkey had used my book to answer one of the questions but that particularly tickled me.

Describe yourself: Dragonslayer (Bone #4, Jeff Smith)

How do you feel: What It Is (Lynda Barry)

Describe where you currently live: Three Day Road (Joseph Boyden)

If you could go anywhere, where would you go? Toronto Noir (Janine Armin and Nathaniel G. Moore, eds.)

Your favorite form of transportation: Walk Through Darkness(David Anthony Durham)

Your best friend is: Tipping The Velvet (Sarah Waters)

You and your friends are: Casting Spells (Barbara Bretton)

What’s the weather like: All the Colours Of Darkness (Peter Robinson)

You fear: The Price Of Darkness (Graham Hurley)

What is the best advice you have to give: Nobody Move (Denis Johnson)

Thought for the day: Don't Look Twice (Andrew Gross)

How I would like to die: A Good Death (Elizabeth Ironside)

My soul’s present condition: Hurry Down Sunshine (Michael Greenberg)

I seem to have read a lot of books with darkness in the title.

not done yet reviewed for the cmaj

I have recovered from chemo but a week end at the Folk Festival and a night of insomnia have left me completely brain dead.

In lieu of any original content on my part, I wanted a share a wonderful review of Not Done Yet, published in this month's Canadian Medical Association Journal.

A physician who treats breast cancer patients might wonder what this blog-cum-book could offer a busy professional whose daily practice likely holds its own heartbreaking quota of Lauries...

However, Kingston’s book provides the detail and emotional shadings that give meaning to these stark, exterior facts. The honest telling of a singular story weaves the experience of cancer into the whole cloth of a life, reworked after a devastating rupture. She vividly integrates events and see-sawing emotions...

Comfortable in her lay-expert role and an inveterate listmaker, she draws from the negative encounters to compile pointers for health care professionals: "Don’t look horrified when I tell you I have metastatic breast cancer; … Don’t ask me questions about my treatment[s] that are irrelevant to the procedure being performed and/or outside your sphere of knowledge [p 190]"

The author of the review, Sharon Batt, is a Doctoral Candidate in the Department of Bioethics at Dalhousie University. She is also the author of the book, Patient No More: The Politics of Breast Cancer about her own experience.

Many thanks to my friend N. (herself the editor of Women Who Care - an upcoming book about "Canadian Women’s Personal and Professional Experiences of Health Care and Caring") for submitting my book to the CMAJ for review.

You can download the full pdf of the review here.