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."

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.

ebook!

Not Done Yet is now available as an ebook on Kobo (other e-retailers to follow). 

I still have lots of hard copies to sell but this is cheaper for you and no shipping!

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?

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.

have you read "Not Done Yet"?

Have you read this book yet?

I think I have all the remaining copies of Not Done Yet : Living Through Breast Cancer in my attic. I'm selling them for $25 (tax included) plus shipping. 

I'm told it's a pretty good book. You should read it. Or give it to someone you love.

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.

housekeeping

I'm going to be offline all this week, so I schedule this post to fill you in on a couple of things.

You can now subscribe to this blog. Quite a few people have asked me about it and it actually just took a few minutes to set up. If you want to get my posts via email, look over at the right hand column on this page. Just under the "about me" section  is a little box in which you can enter your email address. If you do that, you'll be notified every time I write a new post. If you go that route, let me know if it works for you.

I recently found out that Not Done Yet is available as an ebook from a few different sources.

Amazon Kindle 
US
Canada
UK

Kobo

Nook

I also have a few copies in my attic, if you like old-fashioned paper. I bought them at the author's discount, which I'd be happy to pass along to you. I'll even sign your copy and write a personal message. The cost of a real honest-to-goodness paper book is $20.00, plus whatever it costs me to ship it to you. That's a break even deal for me but I'd like to see the last few copies get out into the world. Click on the image on the top, right hand side of this page to send me an email or leave me a message in the comments.

I'll be back next week!

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).

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.

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.

some further and disjointed thoughts on my blogher09 experience

A non-virtual connection with Melissa from Stirrup Queens (and author of "Navigating the Land of If"). We are both holding Nora's head on a stick.

1. If Twitter was played a role at last year's BlogHer conference, this year it was front and centre.
Many of us followed what was happening in other sessions we attended by following the keyword (called a hashtag with a #sign) blogher#09. These are my tweets from the session I attended about "Online Safety for Your Kids Who Are Online Themselves" (I had expressed in my previous post the concern that it would be all about scaremongering but was delighted to find that it was not):

"if you are an engaged parent you have less to worry about in terms of sexual predation online" #blogher09 session on online kids.

it never occurred to me to worry about kids taking pics at my son's sleepover b-day party. should i have? #blogher09 kids online session.

"every technology brings with it new fears." the take away - don't panic! i love it. panel on kids online #blogher09 do you post photos of your kids online? on facebook? flickr? #blogher09

"identifying information that your kids put online has NO correlation with sexual predation." #blogher09

"reputation management" never heard this before in online context. interesting. #blogher09. your photos and words may come back on you, kids

"we are tethering our kids" "we are raising our kids in captivity" - this is the way times have changed. #blogher09.

2. In the closing keynote, the subject came around again, to Twitter. One commenter likened her Twitter community to a support group "I think the women I've met online in the pregnancy loss community have saved my life" (I didn't get her name or blog. Let me know if you did). A powerful statement, but I can relate. She went on to say that support groups are not available 24/7 the way that an online community can be.

3. One of the speakers also observed that most people get started blogging because of someone they know in their "physical life." I thought that was interesting, because it was my spouse (a non-blogger) who introduced me to the blogosphere.

4. Another favourite keynote comment (again, if you know who said this, do let me know): "People with higher levels of income tend to be online. We need to be vigilant that our online communities are not recreating or reinforcing existing inequities."

5. As you can see, I found the content to be very rich and thought provoking this year, despite the size of the conference.

6. I do worry that some people spent so much time tweeting that they missed connections with real people or taking in the discussions occurring around them.

7. One of my favourite Twitter moments occurred when "phdinparenting" lamented her dislike for American beer. She posted about our interaction on BlogHer. It really tickled me that I could be of help. There were lots of those kinds of tweets, throughout the conference.

8. I wish the bookstore had been in a different location. One person suggested in a conference feedback thread that the bookstore would do better closer to registration. I suggested that book signings take place during cocktail parties, in the middle of the action (and of course it wouldn't hurt if free cocktails made people want to buy more books). The conference organizers have acknowledged that the placement of the bookstore in the far corner of the Expo hall was a mistake (too far out of the way. And who wants to buy a book when they are surrounded by mounds of free stuff?). While I do understand how experiments can fail (and how it must have seemed like a good idea during planning) I just wish that this particular year (when I schlepped a bunch of books in my suitcase) had not been the one where the bookstore flopped.

9. Elisa from BlogHer made an observation (in a tweet, of course), that she is trying to learn the distinction between things that are "wrong" and things that are just not her "cuppa tea." That's how I feel about the karaoke during the Friday night cocktail party. I hated it. However, others seemed to be having fun (perhaps I am just getting old), so I got myself a hot date and went to find a patio.



10. I have other thoughts but Sassymonkey and Blondie expressed them already. Go read their posts.

I said many times before going that BlogHer09 would be my last. I hadn't even unpacked my suitcase before I'd begun to fantasize about getting to BlogHer10 in NYC. Anyone want to drive down from Ottawa and share a hotel room with me?