how i fill my days (for better or worse)

welcome to my life

Earlier this week, my friend K. sent me an article from the New York Times that was the best piece of journalistic writing on metastatic breast cancer I've ever read. And I've read a lot on this subject.

I cried when I read it (but as I told K., in a good way) because it resonated so deeply with me, juxtaposing the facts and the experiences of women living with cancer that can never be considered cured. I started to highlight the best bits to share with you here but ended up cutting and pasting more than two thirds of the article.

I've decided that it's best not violate copyright or my own ethics and just post the link and ask you to please go read this article:

A Pink Ribbon Race, Years Long.

it gets better. and it can get better now, too.

Chances are very good that you've already heard of the It Gets Better Project, which was started in response to a series of suicides. Young people (some as young as 13 years old) are choosing to kill themselves rather than continue to deal with being bullied or shamed.

I love this powerful, touching and often funny series of videos aimed to give hope to young (and older) teens who are feeling depressed or alone because of their real or perceived sexual orientation.

This one from Pixar is the favourite in my house.




A day or two ago, The Maven shared this video on Facebook. These kids are saying that things need to get better now, not just in the future. It's brilliant and I am in awe.

Reteaching Gender and Sexuality from PUT THIS ON THE MAP on Vimeo.

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?

well, hello there

Yikes!

It's been a while, hasn't it?

I seem to have lost my blogging mojo. I remember a while back when Average Jane wrote that her blogging had been derailed (my word, not hers) by Twitter and Facebook. I get that now.

Whenever I have a quick observation or a link to share, I can gratify myself instantly with Twitter (I'm lauriek, by the way). And while each tweet does go to Facebook and the sidebar of Not Just About Cancer (on the right - see it there?), it hasn't done much for my blogging.

I don't want to give up the blog though, so I'll try and re-commit to posting regularly (how's that for hedging my bets?).

On the cancer front, there is a little news. I loved having a break in April. That month also brought another clean CT scan. My oncologist continues to be happy with how things are going (or not going, really).

We talked a bit more with about the weirdness of being in ongoing treatment (with side effects that are cumulative, both physically and emotionally). He talked frankly (one of the things that I love about him) about how, in my case, he really has no idea what to do.

We don't know what would happen if I were to take a longer break from treatment or stop it altogether.

"You're a riddle, wrapped in a mystery, inside an enigma," he said, quoting Churchill.

He said that, theoretically, we could start our own clinical trial, where half the women stop treatment for three months and half continue as I've been doing.

"But then what do you say to the women in the first group, if the cancer comes back? 'Oops?' 'Im sorry?' " (I'm convinced that the man lies awake at night wondering about these things. His compassion is another thing I love about him).

He has a way of putting things into perspective for me.

I had planned on asking for another break in six months but he surprised me by suggesting I take a break in August (hooray!)

He also said that, some time in the future, he's not sure exactly when, he's going to feel ready for me to take a longer break. Meanwhile, I'll have fewer appointments with him and, unless I'm worried about something, I can call them in (another hooray!).

I am very pleased about all of this but I admit to also feeling a little blue. I'm still dealing with some of the "grey area" fallout. It's really hard to articulate (and I feel guilty for even complaining. Guilt would be a good subject for a whole other post).

Life is a funny thing. And it's really hard to plan even five years ahead, because you never know what's going to happen. I'm trying right now to return my focus to living in the moment, accepting what is and reminding myself to notice the good things.

it scares me

Every since I could read (and probably even before), I have wanted to be a writer of fiction.

And now that I have the opportunity, I am terrified.

My professional life helped me overcome a great deal of writing anxiety. When you have a writing deadline and you know that fifteen other people are going to comment and edit what you write, you learn to just put fingers to the keyboard and get the job done. This is a lesson it took me a long time to learn but I got there (more or less).

I enjoyed doing the kind of writing that I was able to do for advocacy organizations and labour unions but I seldom got to pick the subject of the pieces I wrote. I learned to write in the voice of the organization I represented or the person for whom I was writing a statement or speech. It was fun and I got to be reasonably good at it but keeping the writing at some distance helped me to overcome most of my anxiety. 

And the sheer volume of work meant that I frequently had little time for angst between cranking out one piece and then beginning the next.

This blog was the next step in my writing evolution. Beginning when I was first diagnosed with breast cancer and at my most vulnerable, there was little that I did not reveal here. Before long, I realized that my writing had changed, that the voice use is now my own.

Then I began to long to create something new, to make up stories in the way that I had as a child. I set this as my next goal.

And then I froze.

Participating in National Novel Writing Month was a breakthrough for me, as I took the short scenes I had written for a fiction course and the notes in my journal and cranked out 50,000 words in less than a month. I celebrated with champagne when I finished. The completion of this project marked a huge personal triumph.

But I have not looked at a single word of the manuscript since November 29th. Moving continuously forward was the key to getting through NaNoWriMo and I did not let myself re-read as I wrote. Then I permitted myself to take a break in December. Then January came and went. And now, we are well into February.

When I set my ten goals for this month, I included the task of reviewing my draft novel. Two days ago, I finally printed it. The pages fell out of the printer and onto the floor. I scooped them up and dropped them on the dining room table, where they remain, out of order and unread.

I'm off to Toronto tomorrow evening. I'm going to bring the document with me and on Sunday's train ride home, I'm going to start to read.

I'll let you know how it goes.

Is there anything that you really want to do that scares you?

soup and the missing muse

I made three soups in January.

Red lentil and carrot from Cooking with Foods That Fight Cancer

Broccoli cheddar from Looneyspoons: Low-fat food made fun!

Jambalaya from Weight Watchers (heavily modified: I substituted white fish for shrimp, used more liquid and had sausage on the side, so folks could choose their level of spiciness. And I didn't use chicken. And I used different spices. This for me, was a wildly adventurous departure).

If I don't run out of time today, I plan on making a pre-chemo Sweet potato and roasted garlic soup from the The Eat-Clean Diet Cookbook: Great-Tasting Recipes That Keep You Lean!
A friend gave this one to me. I recall it being time consuming but delicious..

I have had a post on the tip of my fingers about my current highly ambivalent feelings about my life, identity and treatment but I can't seem to bring myself to write it.

In fact, I can't seem to bring myself to write much these days.

Maybe, later this week, as I recover from chemo.

Tomorrow is Groundhog Day. And the four year anniversary of my mastectomy.

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.

el jay cross-post

Just a few pictures of the new room. Moved in Sunday. It's fascinating, how posessions can reaffirm one's identity SO strongly. You'd think that having your stuff packed away for a year and living elsewhere would somehow solidify your own self awareness, but au contraire! I felt lacking, I felt lost. I couldn't quite put my finger on it, but as soon as I unpacked my knicknacks and books and clothes something clicked, I felt like Kaylin again, capital K, not cancer ass-kicker or patient or whatever. Just Kaylin, and I like this.

Grandma's cigar box and a clay skull sculpted freshman year.

my gents are happy to be out of that stuffy cardboard box.

12x12 living space SLASH sewing studio, not quite sure how I will make this work...

Accidental picture funny face.

Fearlessness isn't a lack of fear, rather, it's a mastery of fear. I'm not afraid of much anymore. I am slightly afraid of cancer reccurance, if only for the inevitable decision I will have to make, but I am most certainly not afraid of death. Or pain. How many people, very honestly, can claim this at 24? I am content with the life I have lived because I've tried my very best to be an honest and passionate woman. I am broken, mentally and physically, but I'm confident that I'll adapt and overcome. Most importantly, I am happy right now. HAPPY. I will never ever ever ever EVER subject myself to the horrors of chemo and radiation and debhilitating surgery again. I gave it a sporting try but now I'm done. I am, um... master of my domain.

landed

I was going to title this 'the eagle has landed' but then given my Canadian-ness , I thought 'the beaver has landed' would be more appropriate but that sounded, well, rude. (And silly, since beavers don't fly. Never mind.)

What I mean is, that I am now in Chicago, comfortably ensconced in my hotel room and ready to attend BlogHer 09.

I didn't get sick (although both my kids did) or my symptoms were really mild (or I have yet to be felled but I won't consider that option). Thanks to everyone who wished me well. I think it helped.

I am typing this (badly) on a lovely little borrowed Netbook, since my computer died on Tuesday afternoon. After calling around for the best prognosis and cheapest care, it seems like it's fixable. I'm glad but I could learn to love this little loaner, even as I adjust to a new keyboard.

Last year, you may recall that my computer took sick right before BlogHer as well. I chose to be computer-less (and while I certainly didn't mind not schlepping the thing back and forth from Oakland to San Francisco and back every day, I did miss being wired. Twitter played such a big role at last year's conference (I'm @lauriek. Follow me, if you like!) and I missed being able to read everyone's comments at day's end and add my own. Also, the comprehensive agenda was online only and I left before it was available, so that was a bit of a hassle. This year's laptop demise may end up feeling serendipitous.

I'm not going to hide behind the computer, though. I made myself some handwritten notes this morning (I try to spend a few minutes writing free-hand most days) which can be summed up this way: relax, don't let my introversion get the best of me and have fun!

I forgot my USB cable (so no photos to download until I get home) and a little gift to exchange with someone. I did remember to bring a friend's husband's forgotten wedding ring and another friend's head on a stick.

The head (well, photograph of a head) belongs to Nora who can't be here (something about having given birth to twins). Nora and I met at last year's BlogHer. I liked her very much. And I must say that she has thus far been an excellent travelling companion. There are a few of us here bearing Nora's head and tomorrow, we are going to try and pose for a group photo.

I have to head over to the conference hotel, shortly (I am staying a few blocks away) and deliver my books the bookstore. I'm doing a signing on Saturday at lunch (12:15 to 12:40). I 'm sharing the spot with Ilene Chaiken (creator of the L-Word), so I will either benefit from her spillover or be left entirely alone. If you don't yet have my book and you want to buy it at BlogHer, I promise to sign it and write something really nice.

unrelated

photo: J. Sussman

"It is one of the ironies of the creative life that while drama is part of what we make, it has almost no place in how we make it."

Julia Cameron
Walking In This World.

some days are blue, some days are indulgent

I have been feeling kind of blue these last few days.

I'm always relieved after I get good scan results but a feeling of let-down seems to follow almost every time and I find myself, once again, channelling Peggy Lee and asking "Is that all there is?"

I just finished the latest round of edits on my book (coming out this spring with Women's Press!) and I have been left wondering, 'so, what's next?'

I haven't looked at the outline for my novel since I submitted it for my writing course on December 31st. The course is over and I am feeling kind of daunted. I've been asking myself, "Can I do this?" and "What purpose would it serve?"

This morning, I had an appointment with my wonderful oncologist who confirmed my CT results. He also referred to my "normal" life.

I told him that I have been feeling kind of "ground down" by the emotional wear and tear of treatment, as much as the buildup of toxins.

He gently reminded me that I need to think of myself as having a chronic illness, "like diabetes", that needs to be managed but that doesn't stop me from living my life.

I told him that I know how lucky I am and that I am very grateful not to be dead (at which point he rolled his eyes) and that I've been doing other things to keep my life full and interesting (like writing) but that I miss the more fast-paced, structured work environment.

My oncologist was sympathetic but said that we are working at keeping treatment "as innocuous as possible." I only go for treatment every four weeks and I phone in for every other appointment with him. And he's right.

The truth is that I couldn't go back to the kind of long hours that I worked before cancer. Even if I could miss three or four days on treatment weeks, my body couldn't tolerate the stress or long hours. And I am not sure that I really want that back or if I am just missing the sense of identity that I got from my job.

My oncologist suggested that I skip a cycle over the summer and I'll do that. I'll also keep working at doing the things that make me happy.

I have the chance to work at making art (and writing is art). I have to embrace this rare privilege, not feel guilty about it or self-censuring and just see what happens.

Some days are easier than others.

I asked my oncologist whether there were any restrictions on my activities. He said, "No." He added that there were also "No restrictions on lifestyle" - this is the same oncologist who suggested that dope would help me to cope with the side effects of chemo (it did!) and who routinely suggests I go out for a drink to celebrate any kind of news (wine for good news, scotch for bad) - "The liver is healthy. So you can party."

To which my spouse replied, "As if she needs any encouragement."

However, given the fact that I have gained 30 pounds since I was first diagnosed (10 of those in the last two months), I think I'll be living a more ascetic existence for a while.

Cross-posted to Mothers With Cancer.

obama's canadian playlist

It's the last day to vote! The CBC has invited us to put together a list of "49 songs from North of the 49th parallel" that would make up an inaugural present for Barack Obama.

What songs do you think of as quintessentially Canadian? Which ones would help educate the soon-to-be President about his neighbours up North ? What subtle (or not so subtle) messages would we like him to be playing on his mp3 player when he goes for a run?

The last day to nominate a song is Friday, January 9th (that's today) at 8pm ET. The CBC will then put together a list of their top 100, which they will post by January 12th. Voting for our favourites will close on January 16th.

You don't have to be Canadian to vote but the songs, or the singer or the songwriter must be Canadian. Send your suggestions to "obamasplaylist at cbc dot ca."

Here are my nominations, sent by email on December 30th:

1. "Kiri's Piano" by James Keelaghan. Keelaghan is a master storyteller and this is a part of Canadian history about which many Canadians remain sadly ignorant (the internment of Japanese Canadians and the expropriation of their land and possessions). Also, the song is hauntingly beautiful. My spouse and I had to pull the car over the first time we heard it (being played on the CBC) many years ago.

2."La complainte du phoque en Alaska" by Michel Rivard and Beau Dommage. Michel Rivard is another terrific song-writer and I think every Canadian francophone knows this song. The song has risen to prominence again recently with the ad "Culture en péril (Culture in Danger)" that Rivard made in support of arts funding (I have lost count of how many times I have been sent the link to this hilarious ad on YouTube).

What songs would you nominate?




Update: voting has started! "La complainte du phoque en Alaska" made the list! They have divided it into sections. You can vote once in each section every day until 8pm ET on January 16th.

just like dr. doolittle

Overheard:

Son (to Father) - "Do you ever talk to our animals? Really talk to them? Mama has entire conversations with the dogs."

Father - "Do they talk back?"

In my own defense, I come by my craziness when it comes to love of animals honestly. My sister is every bit as bad as I am with her cat, Iggie, and my mother can talk to and play with just about any animal for hours.

My mom came from a family of thirteen kids. When we were growing up, my sister and I loved hearing the stories of the animals that lived in and passed through her family home. We still beg to be told these stories and have begun to share them with my kids.

There was George, the budgie, who used to perch on my Grandfather's head (and who died when he came in for a landing, missed and ended up on a hot element).

There were many, many cats, including Fiona (the beautiful), Fluffy (who lost the tip of his tail) and Kelly (the favourite). There was Nicky, the dog that loved to ride on the my uncle's motorcycle. And there were the various animals my mother's oldest brother brought home (often rumoured to have been gambling winnings) - the rabbit (it arrived on Easter and my mother collected hundreds of little "raisins" that the rabbit kept "laying." Fortunately, she didn't try and eat any.), the monkey (banished after he started swinging from the curtains) and the chicken (that my Grandmother found tied to the table leg in her kitchen).

Really, compared to the way my mother grew up, my house with its dogs and cat is really very quiet.

And yes, I do talk to my animals. They are very sympathetic listeners.

it is what it is (and it's all so individual)

Every so often, someone will tell me they feel bad talking to me about their own cancer experiences because they have had an easier time than I have (because they didn't have a mastectomy, they didn't get sick from chemo, they sailed through radiation or they don't have mets).

I always tell them that cancer is scary and traumatic now matter how you experience it.

And besides, it wouldn't make things easier for me if someone else were sicker.

Last night, I was at a beautiful event, celebrating the career of Deborah Bourque, the former President of the Canadian Union of Postal Workers (this is not a non-sequitur. Please bear with me). It was also an opportunity for women working in the labour movement to get together, celebrate our own achievements and commiserate on the challenges we face as women members, staff and leaders of unions (we also ate great food, had a few drinks and shared some laughs).

It was a bittersweet event for me. I saw many wonderful women I hadn't connected with in a great long while. I loved that part. But it's hard to be reminded that I am not really part of that milieu any more. Those day to day struggles are no longer mine.

I don't miss the stress but I do miss the adrenaline.

I don't miss the bureaucracy but I do miss the work.

I don't miss the workplace politics but I do miss the collaboration.

I don't miss the frustration but I do miss the joy that comes with success.

It is easier now not to feel this loss so acutely. There are so many good things about my life. Now that the book is finished, I feel that I have an accomplishment that I can talk about. And now that I have begun to think of myself as a writer, I don't feel the loss of identity as a union activist so acutely.

This brings me back to the original point of this post.

I was out for a walk with the dogs today (it's beautiful and unseasonably warm in Ottawa) and feeling a little bit sad. And then I felt guilty because there are so many women who are forced to work through cancer treatment and pay a tremendous physical price (others work find it helpful to work, which is a different thing), who don't have health insurance, drug coverage, a supportive spouse, or a roof over their heads. I felt guilty that I should be feeling sad when I am healthy enough to play with my kids, go out with my friends and walk my dogs on a beautiful day.

But I was reminded at the conference this past week end that cancer is a very personal thing, in it's manifestations and in how it is experienced.

We gain nothing in judging ourselves or each other.

And we gain nothing when we deny our sadness, anger or joy.

Cross-posted to Mothers With Cancer.

deconstruction not required

I have been dreaming about houses again (you can read previous posts on this subject here and here).

In this latest dream, I am in the middle of moving. It's not my choice to move and I didn't choose the new house. I like my old house and my old neighbourhood and I feel quite sad to leave them behind.

The new house is not filthy or scary or rundown, just unfamiliar and not what I have chosen for myself.

In the dream, I am trying to make the best of it, figure out how to set up this new home so that I feel safe, comfortable and happy.

I think I'm feeling a bit at loose ends this days.

Cancer Bitch Turns a Corner & Runs Into a Wall

Tonight I looked in the mirror and thought to myself, You are cute. I think I have just passed the awkward Sluggo stage and am now a boyish woman in a shorter-than-crew cut. I even have most of my eyebrows back. I am surprised that in all this time, no one's thought I was male. I did have girly-feminine designs atop my scalp and I usually wear two earrings, not the lone little hoop that often signifies Cool Male Who Dares to Pierce One Ear. But approached from the left, I am flat-chested. Then again, I do have a female voice. Today at Whole Foods, for example, I stopped at the Customer Service desk to ask about organic whey protein and the woman at the counter referred to me as a woman. Which I am, of course. But if she could tell, how come other people couldn't tell I was female a few times when I was in my full-tressed glory? My head could have also signified a different identity; last month I met a young person who asked me if anyone thought I was gay because of my short/non-existent hair. I told this young person that only at the Whole Foods I might have been eyed a few times by women, but probably because it's right next to a new LGBT community center.

I choose my words carefully here. I met this young person and I was dying to know this person's gender-- I, who was all prepared to have people ask me whether I was male or female, and to respond tartly: Why does it matter? Yes, I wanted to know whether this short, slight person-- with about 1/8-inch-long hair under a cap, body swallowed by a baggy long-sleeved white shirt tucked into loose pants--was male or female. Why? Why is it so disconcerting not to know? Why couldn't I just have a conversation with a Person? Years ago, a friend and his then-wife returned from seven months in Provincetown. I remember the erstwhile-wife saying she'd been taken aback by all the gay men in P-town. This is what she said bothered her: She was used to speaking to men in a certain way (flirtily, I guess?), and being noticed by men in a certain way, and these men (in stores, for example) were responding differently (or maybe she said not responding). This surprised me. I didn't think I expected as much as she did from men in casual encounters. But I'm not very flirty. Sometimes, though, I feel my eyes widen when I'm speaking to a man who's in possession of stereotypically male expertise--mostly having to do with appliances and automobiles. I guess I sink into the O, what do I know? housewifey mode. I am stereotypically female when it comes to home repairs and hardware, and I'm not proud of this dumbness. But I come by it honestly. My mother didn't change ceiling light bulbs, and as for my father--changing light bulbs was the extent of household expertise. That and killing cockroaches. L changes the difficult high light bulbs because when I use the extender thing I break the bulbs. I kill silverfish and roaches myself. I let spiders out. The other day at the dentist's I noticed a spider, and he caught it in a cup and I let it out on a planter on Michigan Avenue.

But I am moving away from the uncomfortable subject of the young person of uncertain gender.
I introduced myself by name just so s/he would be forced to do the same. Wilily, this young person answered with a name that was neither male nor female. In fact, it wasn't a regular name. Later in conversation I found out that the person was a pre-op tranny, born a girl, identifying as male. And only 18. OK, that explained everything, I was no longer uneasy. I solved the mystery. But there's still the mystery of why I was uneasy in the first place, why I needed the answer to the question: What are you?

And I know that we classify people, and that we want to know the gender of the baby in the passing stroller, and even the dog walking by on the leash. And I know that I want to ask, Where are you from? each time I hear an accent. But why? Because we have certain ideas about what constitutes male and female, and male and female characteristics, and what it means if the person speaking to us is from Poland or Germany (Ossie or Wessie?) and I know I bring certain assumptions if I know my interlocutor is Jewish.

I won't answer this now because I can't. I will only say that in the summer of 1992 I was in Krakow and I was looking for the building where a Jewish girls' boarding school had been housed before the war. It was now a school for the deaf. There was a caretaker couple that was not hearing-impaired, but they didn't speak English and I don't speak Polish. We made do in pidgin German, and using gestures and drawings. I managed to understand that the granddaughter of a former student had visited, and that the couple was going to let me in and look around. School was out for the summer. They asked me, Was sind Sie? What are you? American, I answered disingenuously. I knew that wasn't what they were asking. But I wouldn't tell them I was Jewish. Why? Because I didn't want them to know. Or to know for certain.