"are you a writer?"

The guy at the UPS Store asked me this question (I was using UPS to send some photos to my publisher because PSAC members at Canada Post are on strike).

I looked around to see to whom he was speaking.

Then it dawned on me.

"Yes, I am."

Or at least I'm working on believing it.

I've mentioned before that I have been meeting with a coach since last January. Joyce has a Masters in Education and is part therapist and part life coach. She works with lots of struggling artists and writers, many people currently working in the labour movement and several cancer survivors.

I have always made my living with words but this year I pledged to begin to think of myself as a writer. This need for this had become acute as I relinquished the sense of identity I had derived from full-time work and as the struggle to stay alive had (thankfully) moved the back burner.

With Joyce's input and guidance, I established three goals for this year:

I wanted to finish my book. I am proud to say that I accomplished this (although it never seems to be quite done and I am currently reviewing the copy-editing). I could not have done this without Joyce.

I wanted to build links to other younger people with cancer and spread the word that many of us are living long and well with metastatic breast cancer. I feel really good about my contributions to this blog, Mothers With Cancer, BlogHer and MyBreastCancerNetwork.Com. I also attended a wonderful conference, organized by Living Beyond Breast Cancer.

This networking has gone so well that I burned myself out a little. I have taken a step back of late.

My third goal was to write fiction. I started by playing around a little with my "morning pages" (which I don't always write in the morning). I read and did exercises from several great books (Writing Down the Bones, The Artist's Way, Bird by Bird and The Writer's Path).

Joyce suggested that I needed a writing group and it dawned on me that I could start one. I've done that.

Joyce suggested that I should sign up for an online writing course that would give me some progressive assignments to work on. I did some research and registered for one called "I've Always Wanted To Write Fiction." We are in week four and I am up to date on my assignments.

I am not thrilled with what I have produced so far but I am proud that I have done it. My prose still seems stilted and pedestrian but I am putting my toes in the water. Everything I have read tells me that art takes hard work. I may not be Virginia Woolf (or even Sue Grafton) but I can make art for its own sake. And mine.

And as I re-read this blog post, I realize that I have come a long way this year.

Cross-posted to Mothers With Cancer.

lost

Reading Lene's post on dreams yesterday got me thinking about a post I wrote on that subject last March.

And then last night I had a panicky dream that I was lost in a hotel (hotels and houses seem to be key themes for me). First, I could not find my friends' room and then I could not return to my own. I could not remember my room number. Halls led to nowhere or to places that were completely illogical (like an ice rink). Calls on hotel phones went unanswered, were connected to people far away from the hotel, or produced directions that made no sense (or that I could not remember. These are key fears of mine as a chemo patient - forgetting things or not being able to understand them).

At one point, I was trying to open a door and it turned into a folding wall. For a few moments, I was trapped.

The last thing I remember, was finding the front desk. A woman was giving me directions when my younger son woke me up. Perhaps my dream was about to resolve itself.

I have not been able to fight the lingering feeling of anxiety this morning.

I did have an appointment with the doctor who works with my oncologist yesterday. It was a reassuring appointment, though, as she repeated again that my CT results showed no change from the previous five.

Perhaps I am feeling a little lost now that the book is finished.

The first two weeks after I was done, I felt relief and a sense of freedom.

And taking a break from MyBreastCancerNetwork.Com is definitely the right thing for me right now.

But I think I might be suffering from a case of "what's next?"

I am someone who once really defined herself by work and I have really struggled with the shift in identity that came with being a cancer patient (I feel great most of the time but I am in bed for the days after treatment. My oncologist does not want me to work and I am fortunate to have disability insurance).

One of my goals for myself for this year was to begin to think of myself as a "Writer." In order to do that, I need to keep writing.

I am excited at that prospect.

But I think I am a little scared, too.

what inspires you?

I have been feeling kind of burned out lately and completely uninspired.

Perhaps I have been over-extending myself. And as much as I need and want to write about my experiences as a cancer patient, mining that particular vein can be draining (and I am trying really hard not to repeat myself too much in the different venues in which I am writing).

I did my morning pages today, for the first time in a while and I found it to be a tough slog. I started to list the things that inspire me and I realized that I have not really been making a lot of space in my life to do these things. My days have been focused on being productive and, perhaps, when I have had down time, I have not been engaging in the kind of activities that fill me up.

I think this needs to change. Yes, I have deadlines (and the house is a mess) but I think that I might spend less time staring at a blank computer screen, struggling over every word (or surfing the net to avoid writing) if I let myself spend a little time getting inspired.

Here's my list. What would be on yours?

Reading books.

Knitting.

Going for long walks.

Spending time in the arboretum and other beautiful places.

Taking in other people's art.

Listening to music.

Laughing.

Hanging out with friends and family.

Being silly with my kids.

Spending time with my spouse.

10 things i would rather be doing

1. Reading my book. It's The Book of Negroes by Lawrence Hill (published as Someone Knows my Name in the US). It is harrowing, beautifully written and very compelling. I can't stop thinking about it.

2. Walking my dog along the canal.

3. Knitting a sock while watching Season Five of Buffy the Vampire Slayer (what's the story with the little sister who appears out of nowhere, anyway?).

4. Having a glass of wine on a patio (OK, so it's too freakin' cold and windy to do that but since I am fantasizing, I am imagining it just warm enough to sit outside).

5. Getting my hair dyed blond.

6. Getting my toes painted purple.

7. Reading about Tibetan Terriers.

8. Having a beer with a bunch of friends.

9. Planning a vacation.

10. Taking VIA 1 to Toronto to hang out with my friends who live there.

still going on about cancer clusters

After reading yesterday's post, a friend sent me some links that provide an update on the investigation into a cancer cluster at at the Australian Broadcasting Corporation headquarters in Brisbane. The building was closed in December 2006 but the search for answers continues, as the number of women affected continues to rise.

This is from an entry on Health and Nursing Issues Australia ("a clearinghouse for health, nursing and aged care issues in Australia"), dated December 19th, 2007 and entitled "ABC cancer cluster ‘unlikely to be bad luck’":

"The scientist who oversaw the investigation of a breast cancer cluster at the ABC’s Brisbane studios says it now seems more unlikely that bad luck was behind the cluster.

Professor Bruce Armstrong’s assessment comes after former ABC presenter Judy Kennedy announced she is the latest victim of the cancer scare.

Her case means at least 16 women who worked at the ABC’s former Toowong studios have been diagnosed with breast cancer.

Professor Armstrong says it is more likely that something at the Toowong studios caused the cluster.

“The fact that since we did our investigation there’s been a couple more women diagnosed and various other features, particularly the young age of the women affected … these really add to the evidence that there really was something at Toowong, that it wasn’t just a chance finding,” he said."

There continues to be considerable anger aimed at the corporation, as well as concerns that the ABC management should have acted more quickly to close the building. Despite the fact that the cause of the cluster remains unknown, there seems to be a consensus the building was, in fact the site of a cancer cluster and that those affected deserved compensation and support. In July, 2007, the women affected were granted workers' compensation, "even though there has been no direct link drawn between their workplace and the cancer."

the building

There is a group of seven women with whom I meet regularly. We are working on a writing project together. Each of us is smart, funny, strong, perceptive and unbelievably supportive of the others in the group.

We share a common set of values. We are all feminists, trade unionists and committed to working for social change. We have all had breast cancer. And we all worked in the same building.

Of the seven of us, four were under the age of forty-five when we were first diagnosed. Three of us were under forty. Several of us worked in the same corner of that building, which housed, at most, one hundred people.

Two of us (two of the youngest at the time of diagnosis) have had recurrences.

The US Center for Disease Control and Prevention (CDC) has the following to say about cancer clusters:

"A cancer cluster is defined as a greater than expected number of cancer cases that occurs within a group of people, in a geographic area, or over a period of time...an apparent cancer cluster is more likely to be genuine if the cases consist of one type of cancer, a rare type of cancer, or a type of cancer that is not usually found in an age group."

Do I believe that the fact that I worked in that building is the reason I have cancer? I know it's more complicated than that. I know that environmental toxins can accumulate over a life time. And I know that a whole series of factors (including bad luck) resulted in the initial mutation of cells and the eventual growth of cancerous tumours in my breast, lymph nodes and liver.

There is however, no breast cancer in my family (and both my parents come from very large families). And my surgeon said that, given the aggressiveness displayed by the cancer in my breast and lymph nodes (my breast tumour doubled in size in the month between diagnosis and surgery), that initial mutation likely began at the time that I would have been working in the building.

Do I wish that the possibility of a cancer cluster had been seriously investigated?

Damn right, I do.

In December, 2006, the Australian Broadcasting Corporation closed it's Brisbane headquarters, after ten women who worked there were diagnosed with breast cancer over a span of eleven years. I know that proving a cancer cluster is inordinately difficult. However, raising questions about the possibility should not be met with hostility.

Should we have pushed harder for answers? Would it have made a difference if we had?No one wants to believe that their workplace made them sick. Especially when we felt so privileged to work the long hours we did on behalf of those the organization represents. And the questions we did ask were rebuffed quickly and emphatically.

Last year, the building was sold and is in the process of being gutted by the new owners. The organization built a new, much healthier building. Four of the women in my group still work there (I left the organization for another in late 2002).

Our questions about the building will never be answered.

new directions: a tribute

"Sometimes and often from loss grows a whisper, a roar, and song."
J.L.S. Rebel1in8

Last December, I went to New York to visit my friend Jacqueline.

It was a fun, inspiring week end and Jacqueline made me some garments (and renovated some old favourites) that are still my very favourite things to wear. In making clothes for women like me, who have had a mastectomy but can't or don't want to wear a prosthesis, Jacqueline provided an amazing service.

And she made me feel more beautiful than I had in a long time.

Now Jacqueline has announced that she has returned to working full-time at a job that will fill her time from nine to five but free her up to pursue her art and other endeavours "that this thing called a job will afford me."

Jacqueline is taking a break from Rhea Belle, from making clothes and from her blog, at least for a while.

And I would be lying if this news didn't make sad.

But then I stopped to think about how much Jacqueline has already done to get folks thinking in new ways about cancer and it's survival, about seeing post-mastectomy bodies in new ways and about questioning a world in which hiding the changed "landscape" of our bodies is the only option.

As Jacqueline wrote in "at the end of the day":

"i'm not sure where Rhea Belle apparel or Rebel1in8 are going. if i exert not an ounce of energy more into them, i hope each provided attitude and a truck load of inspiration to have a vision, be creative, get the hell out of the box and do things your own damn way. that's really what it's always been about... an alternative to the cookie cutter mainstream pink ribbon and fake-a-breast propaganda. a reinvention and renovation of the spirit, mind and body landscapes."

My visit to New York inspired me in ways that go beyond the clothing I brought home with me. I returned with a new sense of myself as a creative person, an artist in my own right, who uses words to paint pictures of the world around me.

I am very confident that Jacqueline will continue to create and to inspire others, not matter what path she chooses to take.

on being 'a square peg'

I have been thinking a lot lately about cancer as a chronic illness. This is how my oncologist defines my cancer. My illness will be with me for the rest of my life and I will likely always be in treatment. But my cancer is being managed and I am thinking about sticking around for a long time, and living really well while I'm doing it.

And the truth is, that, much of the time, I feel very well indeed.

Dr. G. often refers to the various tools at his disposal. Some day (hopefully a long time from now), this particular treatment regimen will stop working. When that happens, Dr. G. will use another combination of drugs to keep the cancer at bay. And the longer we can keep one regimen working, the greater the possibility for medical breakthroughs.

More of us are developing cancer at younger ages. And more of us are living longer and well, despite fighting metastases. I have written before about the feeling of ennui that tends to beset me after chemo.

My life looks quite different then it once did and I am still struggling to figure out where I fit in, as a productive member of society. I have been doing a lot of work on this and will continue to do so but it's not always easy.

Nor is it easy to stand by and watch while friends who are overcoming breast cancer are treated callously by an employer who refuses to acknowledge the need for accommodation. To see these very talented women, who have always worked very hard on behalf of their employer being treated so shabbily is depressing in the extreme.

I came upon this article today, written by Jennifer Jaff, a lawyer who runs a non-profit called Advocacy for Patients with Chronic Illness (based out of Connecticut) and who herself lives with Crohn's Disease. It's called Square Pegs in Round Holes and it really resonated with me:

"Despite all the talk in the press about the cost to our society of the health care costs associated with chronic illness, nobody really looks at us and tries to fashion solutions that work not only for those in wheelchairs, the blind, the deaf, but for those of us with illnesses that come and go. They talk about preventive medicine, but that does nothing for those of us who are too sick to leave the house, but otherwise willing and able to contribute whatever we can to society.

Thus, we are left trying to fit ourselves into a definition of disability that doesn't fit us. We are society's square pegs trying to squeeze into round holes. It doesn't have to be this way."

At the moment, I am not contemplating a return to my workplace (and for the record, my employer is very open to accommodation. I had negotiated a very gradual return to work before I was diagnosed with the mets). But I do feel strongly that for those who are willing an able to do so, coming up with a workeable plan for accommodation should become as common place as any other basic workplace right.