is that my ass?

Wow. I really need to lay off the cake.

And where did D. learn that pose? I have a whole bunch of photos of him doing that, now.

Chemo today.

I'll probably be back online tomorrow.

why we do what we do

Yesterday, we had my young son's birthday party at the noisiest place on earth.

Why? Because we love him and that is what he really, really wanted.

I cannot express how wiped out we all were when it was over.

But as I was towelling D. off after his bath last night (and boy did he need it. We all did!), I asked him if his birthday party had been everything he'd hoped for.

He nodded vigorously.

And then he said, "Actually, it was even better!"

So, I'd have to say that it was worth it.

And that I would do it again.

But I am really, really glad that birthdays come only once a year.

what we did in london (part 3)

Wednesday, April 16th

My friend K., S. and I set out reasonably early (thanks to K. arriving at the hotel with good, strong coffee) to visit the Tower of London on Wednesday morning. I had skipped it on previous visits to London in favour of less touristy destinations but S. provided me with the excuse to make this historic site a priority (K. had been before but she happily joined us).

We took a little tour and did some wandering around on our own. The Bloody Tower and the Crown Jewels (which we visited twice!) made the biggest impression. I am never sure, on these occasions, how much my son is taking in. But yesterday, I was in his class for knitting club and the kids were asking about our visit to London and the Tower, in particular. One of the kids asked, "Which king was it who had his nephews killed?". I couldn't remember. But S. replied, without missing a beat, "Richard the Third."

I checked. He's right.

After a couple of hours at the Tower, the three of us found a heated patio where we could have lunch outside. Then we reluctantly said goodbye to K., who needed to return home to work and family. The visit went by so quickly!

S. and I were both sad to see her go but he perked up pretty quickly when I offered to take him shopping (back to Oxford Street) for cds (he had some cash from Grammy and Granddad to spend and he was pretty keen to do so. After he had managed to procure a Rolling Stones DVD set and some Doctor Who audio cds (read by David Tennant, the good Doctor, in his most recent incarnation) and I had found a Spike Milligan compilation for T., a very happy boy and I met Grandpa at the Statue of Anteros.

After we all had dinner, Grandpa took us to see the Thirty-Nine Steps (a comical adaptation of the Hitchcock movie, itself based on the novel by one-time Canadian Governor-General John Buchan). I love live theatre and it was a real joy to see S. get swept up. In fact, in a week full of wonderful experiences, S. consistently says that the play was his absolute favourite.

Thursday, April 17th

Thursday was the day we had set aside for the Doctor Who Exhibition. Expectations were very, very high as we arrived at Earl's Court but I have to say that they were met and perhaps exceeded.

I enjoyed myself far more than I might have without my excellent tour guide (the young S.), whose detailed knowledge of every episode of Doctor Who since the series was revived in 2005 is truly impressive.

That afternoon, it was time for something a little more highbrow. S. wanted to go to an art gallery and, based on Grandpa's recommendation, we chose to visit the National Portrait Gallery. I highly recommend this gallery, as much as a lesson in history as for the beautiful artwork. I especially loved the portraits of Mary Wollstonecraft (an early feminist, she wrote The Vindication of the Rights of Women in 1792) her daughter Mary Shelley (who wrote Frankenstein) and Lord Byron (check out the portrait. Doesn't it explain both his reputation and why he made women swoon?).

The Karsh collection is also truly wonderful (especially the famous photo of Winston Churchill, taken just after Karsh had yanked a cigar from out of the Churchill's mouth). It was also neat to see the photo of John Buchan, since we'd just seen the theatrical adaptation of his novel the previous evening.

S. and I both also enjoyed the Vanity Fair Portraits. We disagreed over the amount of time we wanted to spend in front of each portrait (a couple of minutes versus ten seconds or so) but he waited for me with tremendous patience. I was very proud of him.

One of the best things about travelling with S. is that we were both quite content to wrap our day up in late afternoon and head back to the hotel to lounge around for the evening.

And so we did.

what we did in london (part 2)

Tuesday, April 15th

My friend K. flew all the way from Holland to be with us! We were college room-mates almost twenty-four years ago and became close friends within minutes of meeting (I have very fond memories of being silly together and confiding in each other. She also went to great lengths to help me get over a broken heart. Our adventures included her taking me out on a sail boat so I could scream far away from human ears and to Vancouver, where we stayed at a seedy hotel and pretended we were all grown up).

We'd met up only three times since she graduated. She came to my home town for a few days that first summer and back to visit a couple of years later. Then we lost touch until 2005, when she came to Montreal for a conference and I took the train to meet her for dinner out and a pajama party. Every time we've re-connected, we've picked up the thread of our friendship as though it had never been dropped.

K. is a doctor now, with two beautiful daughters and a spouse who sounds like a great guy. We had a fantastic time together, talking, laughing and playing tourists in London.

That Tuesday morning, S. and I met K. at her hotel, which was just around the corner from ours. It was a beautiful day, so we decided to walk through Kensington Gardens towards Buckingham Palace, stopping for lunch on the way. We hung for a while outside the palace, went into the palace shop to get some souvenir baubles and then toured the Royal Mews. I have to admit that I would have skipped the mews if it weren't for K.'s suggestion that we go. And it really was fun. We saw the queen's horses,


and carriages (the most impressive of which was the one last used for the coronation in 1953).


I am not a monarchist but I was fascinated by the palace and its trappings. It's hard to imagine that these things and all that staff (most of whom actually live in flats on the palace grounds or in the mews themselves) actually belong to real people. How bizarre.

Once we were done with the palace, we crossed the street to buy a teapot. I know this is very cliche of me but this will be my third from this particular London store (the previous two were broken. I bought the first when I first went to London in 2000 and the second was a chemo present I ordered through the mail) and that use a particular kind of filter for loose tea. The three of us decided that I should spurn the more tasteful teapot for it's more garish counterpart.




Teapot in hand, we made our way back to the hotel, where we had curry, dessert and wine, courtesy of Marks and Spencer.

what we did in london (part 1)

I can't believe it but I am still jet-lagged. I have been in bed by nine every night this week and I could be sleeping the day away as well, if I'd let myself.

It was a really great week, though, and totally worth it. For those who've been asking, here is a more detailed account of how we spent our days:

Sunday, April 13th

We arrived in London early in the morning (but two hours later than scheduled) and took the Heathrow Express to Paddington Station and walked the two minutes to our hotel.

Happily, we were able to check in early and our room was a pleasant surprise (other than the overwhelming smell of bleach). It was much bigger than I had expected, and bright, with windows that opened and laminate flooring instead of carpet.

We both crashed for a couple of hours (and I witnessed my son sleep-walking for the first time that I can remember) and then set out to meet my father-in-law who was in town on business. We had a late lunch and strolled from Regent's Park to Oxford Street where we went to Hamley's (truly the most marvelous toy store I have ever visited).

That night, we had Indian curry at a little hole in the wall that was a favourite haunt of Ghandi's when he was a law student. We got home on the tube (after a couple of false starts), despite the fact that we were both hysterical with exhaustion.

Monday, April 14th

We took the a double decker bus from Paddington to St. Paul's Cathedral (a lovely way to get a better sense of Central London).

We walked across the Thames to the waterfront (I couldn't convince S. to get on the London Eye) and toured the Movieum (movies are my son's latest obsession). At twenty pounds for both of us (I had to stop converting to Canadian dollars every time I paid for something. London is expensive), this place this place was a bit of a rip off. Some neat stuff from sets but far two many cardboard cut outs and movie posters.

S. loved it, though.



I thought the animation wing was the best thing, with a comic book illustrator at work in his studio, taking time out to give lessons to the kids who dropped by. We both thought that was pretty cool.

After the Movieum, we went to the movies. After watching the Rolling Stones do their thing (and directed by Martin Scorsese) on a giant screen, I now, finally understand their appeal.

After the credits rolled, we headed home (on the tube again, we didn't take a taxi once the whole week), after stopping to pick up dinner at Marks and Spencer Simply Food (we did this almost every night. S. loved it. We would walk into the store and I would say, "Pick yourself some dinner." We would each get what we wanted, with dessert for him and wine for me and take it back to the hotel to heat up and eat).

S. did some impressive air guitar back in our hotel that evening.

phoning it in

I had an appointment with my oncologist today.

When we arrived at the cancer centre there was a line-up for the registration desk, which appeared to be staffed by someone who was new at the job (I actually muttered to the woman behind me,"It looks like they have the B team on today." Don't judge me. The cancer centre makes me cranky). I stood in line for twenty minutes, only to be informed that my oncologist was running an hour behind.

The waiting room was absolutely packed with grumpy people. At one point, I turned to T. and said, "I loathe this place. I don't just dislike it a little. I really and truly loathe it."

Then I saw my oncologist. It was a very strange appointment. I had no concerns about my health to discuss and neither did he. He told me that I look great. We chatted about our families. He also said that it's silly that I have to come into the cancer centre and wait around for him when we have nothing to talk about. He asked me if I wanted to start doing my appointments over the phone.

I jumped all over that offer.

I still need to go and see him in person every three months or so ("when it's convenient" or when I feel the need to see him). I will continue to have regular tests and scans and to have treatment once a month. But no more waiting for hours to see the oncologist, "just to say hello."

I love that man (and so does my spouse. I am so glad that he was there with me today because my oncologist is so reassuring. I think it might have freaked him out a little if I had come home today and announced, "I don't have to go and see Dr. G. in person any more!").

Dr. G. mentioned again today that cancer is a chronic illness ("like diabetes") that needs to be monitored, treated and managed over the long term. If we see any spots, we will deal with them. And when we need to, we will begin a more aggressive course of treatment.

He also said that there are so many new drugs to treat cancer now that he can barely keep track of them all. He also said that "it's a very exciting time."

This really does make me very hopeful. I am very glad to know that when the time comes to ramp things up again I will have so many options. And that a doctor who is smart, compassionate and really good at his job will be helping me to make treatment choices.

But until that time comes, I am very happy to just phone in my appointments.

my baby is five

For my darling D., on his fifth birthday:

You crawled into my bed this morning, and as you cuddled up with me, I lay there remembering the day you were born.

You came into the world in a real hurry (less than an hour of hard labour) and I remember your plump little body, your lusty cries and the pride on your father's face. When our midwife told us we had a little boy (a surprise, as you were uncooperative during the ultrasound), we knew right away that you would be our D. Your name is one I have loved since I was a little girl but the deal was sealed when S. declared it the perfect choice for his little brother.

We had to stay in the hospital for a couple of days (your little lungs experienced a bit of shock at the rapidity with which you came into the world). I remember how much I missed your big brother (this was during the height of the SARS crisis and only Papa was allowed to visit) but I treasured those first days alone with my new baby.

We had a fabulous maternity leave together (and I lost 48 pounds between your nursing and all the walking I did with you in the stroller). You were, from your first days, the social, engaged, loving, headstrong, mercurial child that you are today.

You are smart, funny, enormously charismatic, and full of wonderful insight into the world around you. It is a privilege to be your mother.

And to quote your own words back at you, "I love you as much as all the days."

More.




Cross-posted to Mommybloggers.

elated, enamoured, educated, exhausted.

We had a wonderful time. And did lots. And saw friends (and Grandpa).

And I have never been prouder of my beautiful, smart, adventurous, loving son.

I'll write more when I am more coherent (I am still recovering from jet-lag).

This photo was taken at the Tower of London. More are up Flickr (taken from Monday, April 14 to Wednesday, April 16) with others to follow when I am back to life.

I am so very glad we took this trip. It was made possible by people who love us and as a conscious decision to make some very good memories.

I was a bit anxious about going but the trip, my son, my friends and family and the people of London, all exceeded my expectations.

Did I mention that we had a wonderful time?

not what i intended

I had my hair cut on Wednesday. I've been growing it out (my hair was very short in the months before my diagnosis but now that I have hair again, I seem to want lots of it). This process has been really slow. The shortest bits on the top are no more than four inches long, despite the fact that my last hair-loss inducing chemotherapy session was in June 2006.

Every once in a while I go in and have it shaped, to make the growing out look less obvious and to avoid looking like I have a mullet. I've been going to the same guy for a few years.

On Wednesday, he cut my hair and then dried it. I was happy with how it looked. Then he set about thinning it out (my hair is pretty thick) and blending in the layers. At least that's what I think he was doing.

The end result is a kind of short shag. I'm not sure how I feel about it. And after getting it done, I kept feeling that each glance in the mirror reminded me of someone.

Last night it hit me.

Jon Bon Jovi.


My spouse agrees.

I'll have to see how it grows out.

S. and I are off to London, England tomorrow. Not sure if I will be online very much. We come back on April 19th.

Regular programming will resume after that.

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.

resolutions: march in review

I planning on calling this post, "ok. i blew it." But then I decided that would be a) not very constructive and b) not entirely accurate.

If you are new to the blog, you can check my review of February here.

When I was very young, I would make resolutions and then pretty much forget about them. For the last few years, I haven't bothered. This year, as I attempt to come to terms with the many ways in which my life has changed, I decided to mark the new year by setting out some goals in response to these changes.

These resolutions are an outcome of my desire to take control over the things that I can when it comes to my health. They also reflect the way that my priorities have changed over the last couple of years.

Inspired by BlogHer's Kristy Sammis every resolution must pass the S.M.A.R.T test. That is, it must be specific, measurable, attainable, realistic and timely. Now that I'm a few months into this project , I am realizing that some of my goals were SMARTer than others.

FAMILY

I have been spending time with my family and loving it.

HEALTH

Julia Cameron, author of The Artist's Way (Artists Way 10th Anniversary Edition), writes about "creative u-turns" in terms of an artist's progress in overcoming blocks. In March, I made a whole bunch of u-turns. Creative ones, definitely, but I can use the term in the context of my health as well (and in a major 'aha!' moment yesterday afternoon, I realized that progress on these fronts goes hand in hand for me. Perhaps this should have been obvious but it really hadn't occurred to me to make a clear connection before).

Towards the middle of the month, I stopped paying attention to what I put into my mouth. This eventually slid into self-medicating with food to numb anxiety over a pending deadline and to comfort myself at the loss of a friend. After a couple of weeks of this, I started to feel pretty crappy and run down (I also found myself really struggling with editing and writing. Not entirely sure about cause and effect. It's a bit of a 'chicken and egg' question, really).

So today, I began anew. I am carefully counting Weight Watchers points and I am doing my best to eat things that are good for me (especially easy things like veggies, flax seed and green tea). I had fish for lunch and I won't nosh into the evening. And, once again, I will cut out as much refined sugar as possible (this will be easier now that the Girl Guide Cookies are almost gone).

I am pleased that I have been doing more cooking (in my case, 'more' means 'some' since even a meal every other week is a marked increase in my contribution on this front) and resolve to cook at least one family dinner each week in April.

In the end, the scale says I lost five pounds this month but I think that's the chemo diet. I suspect that the four pound drop from last week is mostly water and that the chickens (or the pizza and wine) will come home to roost later this week.

My success on the fitness front was more mixed. I fell just short of my walking goal. I didn't go to yoga at all, nor did I make it to any other kind of fitness class. On the other hand, I worked my abs a few times (I'm guessing eight or nine. This month, I'll keep track), which is, if I'm honest, more than I have ever done before. I feel pretty good about that.

In April, I will once again aim to walk an average of at least an hour five times a week and an extra thirty minutes once a week. Spring seems to have finally arrived, which will make achieving this goal considerably more appealing.

I will also do those excruciating crunches every day, except the three days after chemo.

Since the big deadline continues to loom, I won't set any goals that involve getting to yoga or fitness classes until after May 1st.

GETTING ORGANIZED

On this front, I admit to complete and utter failure. Clearly my procrastination when it comes to writing does not manifest itself as frantic home improvement. There is clutter on top of my clutter.

And there are things in the backs of my fridge, freezers and cupboards of such uncertain vintage as to be unrecognizable.

I think I'll cut myself some slack in this area and consider myself to have done well if we all have clean clothes, a narrow path on which to walk, room in the fridge to put things and enough clear surface area on the dining table on which to put down four plates.

To expect anything else right now is to set myself up for failure.

April will be a very busy month. May can be spring cleaning month in my household.

What about you? Did you make any resolutions this year? And how is that working out for you?

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.

silly soothes the soul

I lost count of the number of times we watched this tonight.

My sister, if she hasn't already seen this, would love it.




Update: It turns out that there's a whole bunch of these on YouTube. The kids and I may have watched them all. These guys are awesome. And hilarious. I just wish I could understand the banter.

too young too soon

I am grieving the death of an old friend today.

Ron Crawley, many people will miss you very, very much.

Instead of a regular post, I am linking to a post from BlogHer by Catherine Morgan. It's about the environmental causes of breast cancer but the information applies to other cancers as well.

all at once

I was planning a post about cancer clusters today but I have decided to put that off until tomorrow.

Instead I will link you once again to Sara, who has left me furious, sad, scared, hopeful. inspired and even amused by a single post.

Cancer is a bitch.

before i die

As part of an exercise I did last January, I wrote a list of things that I would like to do before I die.

Don't worry, I'm not being morbid nor have a received any bad news of late. It's an exercise that anybody could do, although it does feel more loaded now than it would have before I was diagnosed with cancer.

I re-read my list today and was surprised by it, even though I only wrote it two months ago.

The list contains things I feel I ought to do and things I fantasize about doing, things that are achievable (and that I will do) and things that probably fall under the category of pipe dream.

This is what I wrote, through stream of consciousness and completely uncensored:

Finish my queen-sized bed spread.

Write a novel.

Organize my house.

Travel with my kids.

Go back to school.

Run a marathon.

Participate in flyball or agility with a dog and my older son.

Get the message out re living long and well with metastatic cancer.

See the midnight sun again.

Go to Australia.

Become a soup-making expert.

Get more writing published.

What would be on your list?

how aware are you?

This blew me away:


Awareness Test - Watch more free videos

I think I'm going to be very nervous next time I'm on my bike.

in defense of universal health care

My friend Sara has just written the most beautiful, moving and utterly persuasive post in favour of universal health care that I have ever read.

boiling blood

I can't stop thinking about this story.

This should never, ever have happened. And so many medical professionals contributed to the problem.

It makes me furious.

Beverly Green, who is featured in this article (and was on the front page of the Globe and Mail last week end) is 45 years old and dying of liver metastasis. She found out way too late that she should have been given Tamoxifen.

I know that the government review being conducted will not lay criminal responsibility but I would really like to see some heads roll.

feeling well. and irony noted.

I had my regular oncologist appointment today.

The thought occurred to me, as I readied myself to go, that I am feeling healthier these days than I did before my diagnosis.

It took cancer to get me to take care of myself.

dreams

I have recurring dreams.

And while I don't remember all of my dreams, there are some that stay with me very vividly. I don't believe that all of my dreams have great meaning (and some make so little sense when I wake up that I don't even try to ascribe meaning to them) but sometimes, I really feel that my dreams relay messages from my sub-conscious.

I still occasionally have a dream that I am back in university. It's time to write exams, only I haven't been to class (OK some of this did actually happen in real life). In fact, I had no idea that I had even signed up for that particular course.

It's very stressful.

In a recent version of the dream (and I have had this one more than once), I have had to quit my job and go live with my parents, since I have just found out that I did not complete high school. In this dream, I can't even find the school office to get a copy of the class schedule. As the end of the school year approaches and exams loom, I realize that I have not attended a single math class (I don't even know where the classroom is).

At the most stressful periods of my working life, I found myself back in grade school (it is not fun being the only adult in Grade 4).

When I was pregnant with my first child, I dreamed that I gave birth to a chicken. I was horrified. I knew that I was supposed to love that chicken and I was wracked with guilt that, instead, I was repulsed by it. I was especially terrified at the prospect of breast-feeding the chicken.

Several months later, I dreamed that I gave birth to a golden retriever. I took that as a sign that I was making progress in my mental preparation for motherhood. I still didn't know how I would breastfeed a puppy but at least the creature in the crib was mammalian (and the thought of cuddling with it did not freak me out. I have never really liked birds).

In the year before my cancer diagnosis (my last year of working crazy hours), I dreamed that I had inherited a house. After living in it for some time, I would always discover that the house had another floor to it, one I had not known existed. This attic didn't always look the same but it was always beautifully furnished, dusty and fairly vast. My feeling upon discovering it was always wonder, mixed with a lot of fear and some excitement.

I took that one to mean that there was some aspect of my past that needed exploring. Perhaps I was also telling myself that I was neglecting some part of who I was.

More recently, I have been having a dream that is likely related to the unexplored house. In this one, I am staying at a large hotel. It always looks different and the location and reason for travel also vary. But in every dream, I get locked out of my room and I can't find my keys (this is something that happens to me almost every time I travel. And I lose keys all the time). I spend the rest of the dream wandering the halls, trying to find the front desk or, if I succeed in getting a new key, I can no longer find my room. All the hallways and every floor look exactly the same. Or the numbers have disappeared from the doors. Or I get my key to work in a lock, only to find that door opens to an empty room (or one with someone else in it. I have had this happen in real life, except that in the dream, I am the only one who seems to be bothered).

It's not a panicky dream (like the school ones), just a frustrating one. Perhaps I am just feeling stuck and not sure how to get to where I want to go (and unsure of what the destination should be).

I think dreams can tell us a great deal about ourselves, if we can actually figure them out.

Thoughts? Feel free to psychoanalyze me or share dreams of your own in the commments.

A version of this was cross-posted to Mommybloggers.

a change is as good as a rest

And a rest is as good as a rest, too.

S. and I had a great time in Toronto. I really didn't do a lot of parenting, as S. and Grandma were pretty much inseparable. They saw a lot of movies, ate food that we can't keep in the house (nuts, peanuts and sesame, due to D.'s allergies) and just generally enjoyed each other's company.

S. also discovered bitstrips. How could a kid who loves comics and the internet resist?

And, as his proud Mama, I have to crow that he created comic strip embedded above, all by himself (yes, I swear he really is nine). "Susan" is a nom de plume (or rather the name of the adult whose account he was using).

And as for me, I slept a fair bit, did a bit (a very little bit after the first couple of days) of writing and spent time with really good friends.

I also did lots of walking. On Saturday, I walked the length of Queen Street from Coxwell to Crawford (and then up, almost to Bloor), about 10km (more than 6 miles). It was a really fun way to see a real cross-section of Toronto life.

I played tourist, too.

If you're ever in Toronto, you really should check out the following:

• go here, if you are a knitter
• eat here, if you like good, cheap food and a really relaxed atmosphere
• hang out here, if you like to take in a bit of history, enjoy artists studios or just like to drink locally brewed beer
• get take out from here if you like Caribbean food (you can't get good roti in Ottawa).

And there's more. I saved the best part for last. We drove (T. and D. had come to join us) home in record time. And no one puked.

lost

When the dust had settled from yesterday’s traumatic train adventure (actually S. had put it all behind him by the time he hit the bathtub at his Grandma’s house. I, on the other hand, am still recovering) and once clothes were washed and boots were scrubbed, I realized that we had not made it off the train without leaving some things behind.

While still on the train, I had put all of the still clean contents of my son’s back-pack into a garbage bag, while putting the things that would need to be washed into another. Somehow my son’s thumb drive and mp3 player did not make the transfer (or perhaps we lost them when the bag fell apart, clattering his belongings all over the floor of the train station. I can’t be sure).

The loss was not noticed until much later. As I write this, we are still hoping to hear from Via Rail that at least the mp3 player has been found. I, am, however, not holding my breath.

At least these lost things are replaceable.

When my son was very young, he had a small stuffed dog. Little Dog (at that stage in his life, he named his toys very prosaically) went everywhere with him. Small enough to fit in the palm of my hand, we lived in fear of losing this toy to which my son was very deeply attached.

Little Dog was lost and then recovered several times. We found him once in a tree outside my son’s day care, another time in the middle of an intersection in front of the airport. Then, one day he was lost for good, having perhaps fallen out of a car on a day full of errands.

Six years later, my son still cannot bear to talk about it.

I understand this. More than once, I have put dolls and stuffed animals on buses so that they could make their way home to children who have left them behind. And once, on vacation, my own parents sent a taxi back to a hotel to recover my beloved stuffed kangaroo (more than thirty years later, ratty old Skippy still resides in my bedroom closet).

But an mp3 player, I console myself, can be replaced.

And some day, I am sure I’ll be ready to take the train with my son again.

and we’re off!

March Break has arrived and I am off to Toronto with my oldest son. As I write this, we are on the train and he is amusing himself taking pictures of his mother with the camera in my phone (I had to get my niece to show me how to use it when we were in Florida).

It takes at least four and a half hours to travel by train to Toronto (longer if you are on a milk run, which we are). S. is now shooting riveting video of me typing and himself watching me. Whatever gets us through the long trip, I guess.

We were supposed to leave yesterday but arrived at the station (in the aftermath of another really big snow dump) to find long lines, bad tempers and complete chaos. Our line snaked clear around the station, it’s ending ambiguous (and the folks in each fork threatening to get ugly).

At one point, a disembodied voice actually announced, “If you are going to Toronto, your line is over there” with absolutely no indication as to where “there” could possibly be.

Faced with long delays, several hours of standing in line and arrival at our destination in the wee hours, I decided to cut our losses and postpone the trip to Grandma’s until this morning.

S. was very disappointed but quickly brightened when I offered up dinner at a local gourmet burger joint (three pages of possible toppings and a ‘tower of rings’ are all on the menu) where I downed a big beer (and blew my weight watchers total through the roof).

Early this morning, the train station was unrecognizable from the evening before. The lineup was short (all things being relative) and I felt fine about letting S. explore a bit (without the crowds, I could keep him in my line of vision).

We’ve boarded the train, listened to music, done some reading. S. has told me a story.

Only three and half more hours to go.

Sigh.

D. and my spouse will join us on Friday.

Update: Our trip, in the end, was plagued by delays. And motion sickness. That boy has not brought up so much over such an extended period of time since the Great Rosh Hashanah Puke-fest of 1999. It was grim. Very grim.

Note to self: Too much reading on a moving train is not a good thing, even if the evil genius did write his own magazine and vandalize a picture of his father.

book review: the middle place

I really wanted to like this book. And I was really worried that I wouldn’t.

You see, it’s a breast cancer memoir, written by a young woman (37 at the time of diagnosis) who is also the mother of two young kids.

Sound familiar? And yet, when I first picked up the book, all I could see were our differences (it didn’t help that the review copy I received had what was for me an off-putting quote on the cover about finding out you have cancer and thanking God that you’re somebody’s daughter. I note that the final cover is lovely and much more befitting of the spirit of the book).

I was worried that the book would be badly written or that Kelly Corrigan, the author, would be someone to whom I could not relate at all. I worried that our approaches to cancer, to life and to our common experiences would be too disparate.

I needn’t have worried.

Our differences (which weren’t that significant, anyway) didn’t matter at all once I reached page 11 and the read Corrigan’s description of how she found her lump:

“When Edward [her husband] is away, I often find that I’ve been talked into the tub so that the girls can pour too much shampoo on my bushy brown hair…except on this night, as I brush past my breast to get some soap out of my eyes, I think I feel something hard, just there under the skin. I touch it once, pressing it lightly into the open palm of my hand, and then, after a flash of shock passes through me, I force my full attention to bathing the girls…As I dry myself off, I know I have to touch it again, just to be sure I’m wrong. I’m not.”

Over the next few weeks, Corrigan would continue to check the lump, “… I touch it again and again, like you would a loose tooth or a cancer sore, each time, surprised to find it still there.”

These words resonated very strongly with me. I was hooked.

The book alternates between stories of growing up in a pretty traditional Catholic family (Corrigan has two older brothers and was very much the apple of her father’s eye) in Philadelphia. At first, I was much more interested in the cancer-related material in the book than I was in the stories about her family (although her description of killing a giant snake that her brother had bought definitely got my attention). Then came the story of Corrigan’s year in Grade 6 when she was tormented and excluded by a group of girls. Her mother later identifies that as the worst year of her life, explaining, “You’ll see. When you’re a mother and your kid’s in pain and you can’t stop it, its hell. Absolute hell.”

This reminded me of my own son’s very difficult time in Grade One and of how truly distressing it is to see your child in pain. It caused me to think, as well, of my own parents. I have come to realize that the only thing worse than having cancer would be to have it happen to my child. And I reflect on how difficult my experience with cancer has been for them.

Corrigan is a gifted writer and she does a great job of describing those first conversations with friends and family and dealing with others’ emotions as well as her own. I fielded countless questions from friends and acquaintances when I was first diagnosed, about finding my cancer, my treatment and what I thought could have caused it. As Corrigan says, “It’s a big job, being the first person your age to have cancer.”

Also extremely evocative were her descriptions of chemotherapy (and being both fascinated and repulsed by other patients), missing life while in chemo’s haze (not being able to be there for her kids, missing moments you know you’ll never get back) and finding herself, never really having been sick before suddenly taking a long list of meds to manage the cancer and it’s side effects.

In the end, when Corrigan has her lumpectomy (she had chemo first, followed by surgery and then radiation), she finds out that her lymph nodes are clean and that her tumour had clean margins (this is very good news). She also finds out that her tumour is hormone positive. This will make her cancer easier to treat. The treatment, however (Tamoxifen) will shut down her ovaries for the next five years.

Corrigan is devastated by this news, as she had always planned to have more kids (this may still be possible once treatment ends but it will be an uphill battle). I knew that my family was complete long before I was diagnosed with breast cancer, yet I can empathise with Corrigan. Chemotherapy sent me into early menopause at 38 and I do grieve a little bit at the myriad ways that cancer has changed my body.

The reality is that cancer changes you. Irrevocably. Corrigan laments not being able to “go back to the life I had.” I can really relate to this. When we are first diagnosed with breast cancer, most of us tell ourselves that we will put up with the worst cancer throws at us, get through treatment and then pick up our lives where we had left off. It doesn’t work like that. Even for those lucky enough to avoid (or defer) a recurrence, cancer remains a presence in our lives, manifesting itself physically and emotionally.

While Corrigan is still in treatment, her much loved father is diagnosed with prostate cancer. On the one hand, you get the sense that Corrigan welcomed the distraction the opportunity to do something for someone else (even if, in doing so, she admits to driving everyone around her crazy, as she obsessed to the point of asking input on her father’s treatment from her surgeon as she was being prepped for her lumpectomy). On the other hand, I remember very well what it feels like to be in that initial phase of cancer treatment. And, honestly, I can’t imagine what it would have been like to add worry for a loved one to the mix at a time when I could barely keep myself together. And, again I am reminded of the period when my son was in crisis at the same time that my mother suffered a heart attack after undergoing surgery. I remember what it was like to forget to breathe, to feel as though you might die from the stress.

Other parts of the book made me laugh out loud, though. I particularly loved her description of the “Guess Jeans Fight” of 1984, a row she had as a teen with her mother (she wanted to get a job to earn the money for the jeans. Her mother vetoed that but later relented by buying them as an early Christmas present). In a subsequent passage she tells about losing her virginity while wearing those same jeans, “…Jimmy Betts, with hair as light and tousled as an angel’s, was my first non-fictional boyfriend..”

The story that remains with me, though, is not really about cancer at all. Towards the end of the book, Corrigan and her family went on a Mexican beach vacation with friends and their young children. One evening, as they settle in for cocktails and ready themselves to make dinner after a day in the sun, Corrigan notices that Claire, her toddler, is nowhere to be seen. A frantic search ensues (could she have gone back down to the beach by herself?), and eventually, the child is found, curled up and asleep.

I feel the waves of relief as I read this (what parent hasn’t felt that panic for even a few seconds at some point?) and I can’t help thinking, yet again, about how life can change in an instant.

As I write this Corrigan and her father are both doing well. Although, her father is in treatment for a recurrence, he continues to coach lacrosse. Corrigan continues to write (you can read more about her and her book tour here).

I highly recommend this book – if are seeking insight into what it’s like to be diagnosed with breast cancer in your thirties, are seeking words that reflect your experience (no matter how different your background or life goals) or if you just enjoy a moving story, told well and with humour.

The Middle Place is published by Voice (Hyperion Press).

stop the presses!

The headline would read, “Two young Ottawa brothers, five years apart, play together for more than an hour without fighting.”

I didn’t really plan to have my kids so far apart. It’s just that I wasn’t in a big hurry to be pregnant again after the first time (I was sick the whole time, with horrible heart burn and fatigue. I was also plagued by what I later learned was ante-natal depression).

And then when I was ready to be pregnant, I had a miscarriage at eleven weeks. Having lived through that enormously traumatic experience, I was not keen to try again for many months.

So my kids, in the end, were born almost exactly five years apart.

At first, I found this to be advantageous. S. was keen to show the new baby how grown up he was and began to get dressed by himself every morning. He was also very eager to help and I would have him hand me things when I changed a diaper or simply make faces at the baby to keep him entertained (at that age, the boys found each other to be endlessly fascinating). It was good to have a child who was a little more independent, when the little one relied on me for everything.

But as the boys grew older, and their interests grew more disparate, they stopped seeking each other out quite so much. And they also figured out how to get under each other’s skin as only siblings can. These days, they seem to only play together under duress (or in response to a bribe, I admit it), when D. is bored and S. must “entertain” him as one of his chores. And all too frequently, even this scenarios end in yelling and tears of frustration.

There are, however, glimmers of hope. The boys do tend to stand together in times of adversity (usually in opposition to their parents). And they genuinely missed each other (at least in theory) when D. and I were away for a week.

And then, last Saturday, a remarkable thing happened. D. decided that he wanted to write a story. When S. heard the title, “The Boy who Fell Down the Toilet,” he became very interested (nothing like a scatological reference to bring two boys together), got out the computer and proceeded to download graphics from the internet to use as illustrations. Before long, the boys had created a series of four short stories, written by D., with illustrations, typing and editorial input by his older brother.

The stories (in which the poor central character went on to get stuck in a sewer, a bathtub and a sink) were then performed to great acclaim for a parental audience (they really are both bright, funny, creative kids, in my entirely unbiased opinion).

The glow from that morning lasted for the rest of the day, as the boys basked in their success. I knew it wouldn’t last but the fact that this rapprochement had occurred made me very happy.

I want very much for my boys to be friends as adults. My own relationship with my sister is extremely important to me and it means a lot that we genuinely like each other, in addition to our strong sibling bond.

I know my boys will be good, kind men who will look out and care for each other. Saturday’s events gave my hope that they might be friends as well (and successful creative geniuses, too, of course).

So when yesterday morning rolled around, with both boys screaming and in tears (with lots of cries of “He always…!” and “He never….!), I quietly reminded myself of Saturday morning and waited for the storm to pass.

Cross-posted to Mommybloggers.

irreconcilliable truths

Fact: Yesterday was a chemo day. And even though it had been four weeks since my last treatment (and I felt terrific), my neutrophils (the white blood cells that fight infection) were barely above the point at which they cancel chemo.

Fact: At this time of year, my youngest son is a snot factory. This morning he was cuddling in my bed, sharing my pillow when he wiped his nose with his hand and then proceeded to stroke my face (a gesture of love. I only recoiled inwardly).

This, I remind myself is why Neupogen was invented. Bring on the super-expensive little vials (ten doses after each treatment cost more than $2000). Bring on the needles. I'm ready.

cap in hand

The more observant among you will have noticed the addition of a "donate" button to my sidebar.

I've called it the "tip jar" to make myself feel better about having it there.

This is something I have resisted doing for a long time (although I have never judged others with these little do-hickeys) because it felt too much like sticking my hand out (which it kind of is). And, as cancer patients go (and actually, as people go), I am incredibly fortunate. I live in a country with universal health care, I have good private insurance, which includes long-term disability and we are a two income household.

But my income has dropped considerably on disability insurance (which is a percentage of what I was making when I went off and not indexed to inflation). And this blog (and by extension, cancer - the irony is not lost on me) has opened up a whole new world, in which I would like to continue to participate.

There are a number of conferences in the coming months that I would love to attend:

The World Conference on Breast Cancer , in Winnipeg, June 4-8.

BlogHer, in San Francisco, July 18-20.

The Cancer Bloggers Reunion (organized by the Assertive Cancer Patient), in Seattle, July 23-25.

Now, the world certainly won't end if I can't participate in these events but I would love to go to at least one of them. I do feel that I have a real contribution to make, that I will learn a lot and that my writing, this blog and my community (online and off) will all benefit.

So I am looking at myriad ways to keep costs down. But I'll still need to find funding to attend even one of these conferences. To that end, I have opened a savings account into which I am putting my ad revenue (a whopping $100 since December). And if anyone clicks on the tip jar, it will go in there, too.

So if something I write particularly resonates with you and you have a little extra dough, by all means, click away. Or if you've always wanted to buy me a beer (or a glass of wine) or even take me to lunch, now's your chance.

And a note to my friends who sent me to BlogHer for my 40th birthday last year and to my family members who have already been unbelievably generous: this request DOES NOT APPLY to you! In fact, I think the button won't work if you try to use it.

Off to chemo today. Not minding so much now that I know I'll have three glorious weeks off.