a bright light lost

Smart, funny, creative, talented Sara has passed away.

I only knew her as an online presence (although we did once spend more than an hour on the phone together) but I am grieving tonight and for all the people that love her.

I am told that Sara loved red wine and good tequila so if you partake of either of these tonight (and even if you don't) please raise a glass in her honour.

I am going to put on the lava earrings I bought from her (they are my favourites).

Damn. Cancer really sucks.

author not pictured

Some time between when we pointed the car towards Florida and made our way back (we had a glorious time, by the way. Few photos this year but it's still this beautiful in Siesta Key), my book was published.

The dogs were less than impressed but the human members of my family are all very proud and I am so pleased to actually have a copy to hold in my hands. You can get yours from Women's Press or wait for details of the launches we are planning in Ottawa and Toronto.




And last night, S. won an Honourable Mention in the short story category (for 9-11 year olds) in the Awesome Authors contest, run by the Ottawa Public Library. His story, "The Man in the Photographs" was about how he never wants to seem as uncool as his father. "Pure fiction," he said at the awards ceremony.

photojourney

Ottawa, Ontario. March 12th. 10:30 am.


Scranton, PA. March 12, 4:15pm. S. is a huge fan of The Office. We made a detour for this photo.


Harrisburg, PA. March 12th, 6:30pm. T. checks GPS while the boys ham it up.


Port Wentworth, Georgia. March 13th, 10:45pm. He feel asleep with his arm around my neck.

what if?

"We have all the tools to eliminate mortality from Her2 positive breast cancers in the next 10 years."

-Dr. Eric Winer, Director, Breast Oncology Centre, Dana-Farber Cancer Institute (February 28, 2009, 9th Annual Conference For Young Women Affected By Breast Cancer).

Her2 is a protein. And it fuels cancer cells. Her2+ breast cancers are always very aggressive and, had I been diagnosed before Herceptin was widely available, I am sure that I would not be alive today. Now, a whole host of new drugs are being developed to attack this breast cancer that affects primarily younger women.

Dr. Winer's words are among the most hopeful that I have heard in a long time.

And then today, I heard a story on the CBC about a man who is being forced to choose between taking an oral chemotherapy drug for his brain cancer or feeding his kids. It's heart-breaking.

And, I can't help but wonder, what if, when the Herceptin stops working, neither my government or my insurance company will pay for the next course of treatment? What happens then?

Dr. Winer also noted that 30-40% of all women with breast cancer metastases will eventually have the cancer spread to the brain. He told us that Herceptin doesn't pass through the brain and suggested that all women with metastatic her2 positive breast cancers have brain scans done every 6 to 12 months. Guess what I am going to be talking to my oncologist about during my next appointment? (Although, vinorelbine, the chemo drug I'm taking is sometimes used to treat brain mets. That's reassuring).

I hope this is making at least a little bit of sense. I have a raging head cold and am feeling pretty muddled. My spouse was laughing at me this evening, reminding me that I am always very stoic about the big things (like, say, having a liver the size of a watermelon) but a garden variety head cold turns me into a whimpering puddle of goo.

I guess I am reminded that, generally speaking, I am very healthy these days. And that, in itself, is very hopeful.

This brings me to my second favourite quote from the conference:

"The best predictor of doing well is doing well."

-Dr. Winer.

Cross-posted to Mothers With Cancer.

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.

living with it

I have just come back from an echo-cardiogram appointment (I have regular echos to make sure that Herceptin isn't damaging my heart) or rather what I thought was an echo appointment. It had previouslybeen scheduled for Thursday, February 26 (when I was travelling to Dallas for the Conference for Young Women Affected By Breast Cancer) and I'd had to reschedule. I had entered the appointment (I use Google Calendar) for Friday, March 6 at 3pm. It turns out the appointment is for Tuesday, March 10th, at 3pm.

Since I was told about the appointment over the phone, I have no idea where along the channel of communication the mistake was made - as it came out of the caller's mouth, or as it went through my (increasingly sieve-like) brain. I guess it doesn't really matter, though (and next time, I will call to confirm).

I did find that it made me feel a lot better to get out of the house (both physically and mentally). Can you remind me of that next chemo cycle, please? I don't know why I am still figuring these things out.

I am still all aglow from the conference (even if I have been too tired to write about it). It was a truly supportive, joyful atmosphere, despite the shared circumstances of the women in attendance. I had been hoping to learn (and I did). I had been hoping to get a chance to talk about my book (and I did). I had been hoping to meet a few nice people (which I really did). I did not anticipate how very inspired and hopeful I would feel on my return. I am so grateful that I was able to attend.

There were some excellent sessions on practical and medical issues (I mentioned the session on nutrition in yesterday's post and I will write a post on Monday about the medical stuff) but also workshops and speakers that addressed what it means to live with cancer.

Here are some of the comments that resonated with me:

From Advanced Breast Cancer: Living With Uncertainty, a workshop led by Mary K. Hughes, a nurse who helps cancer patients cope with anxiety and depression-

• Instead of focusing exclusively on what we have lost, it is important to "find new meaning in what you can do."

• There is a difference between depression and the grief we all experience as women living with metastasis.

• People often tell us we are brave. We don't generally feel brave, just that we are doing what we need to do.

• It's hard to explain to people that we will never be "done with treatment."

• "Coping is temporary. Adapting is permanent." This is so true.

• Talking about our cancer "takes the power out of it. It's like deflating a balloon."

From Happiness In A Storm: Embracing Life Through And After Cancer, a keynote address by Dr. Wendy Harpham, MD, FACP and multiple cancer survivor, speaking about her own experiences:

• When she was first diagnosed with cancer, she had a busy practice and two kids. Cancer felt "like a storm had descended." I can really relate to that metaphor.

• A "healthy survivor" is one who gets good care and lives as fully as possible. Good health is a "wholeness of body and mind and not dependent on biology." Dr. Harpham advised us to "make your life the best it can be, whatever the circumstances."

• Minor discomforts (hello lymphedema!) can be an obstacle to happiness. She called it "the rubber band syndrome."

• Unpleasant emotions can be "the signal of a problem or the response to a problem." They can sometimes be used "in healing ways."

• "Anger and grief have a purpose."

• "It matters less what you feel than what you do with what you feel."

• "Live until you die." I know that sounds obvious but it is easy to lose sight of the living when all you can see is the illness or the ways in which your life has changed.

• Strike a balance between hope and acceptance - "hopeful acceptance."

• "Setting the stage for hope is a choice."

• "A prognosis is not a prediction."

• "Little problems have become trivial. The ordinary has become marvelous." I have written about revelling in the mundane.

• "Even the hard stuff reminds me that I am alive."

• On communicating with kids - "open the lines of communication and tell the truth. The greatest gift we can give our kids is not to protect them from the world but to give them the skills to deal with what life deals them."

As someone who lives with metastatic breast cancer, I will be in treatment for the rest of my life. I am also in remission and live a full and happy life, despite the challenges I face. It was so inspiring to be around people who really understand this.

The women pictured above were among the nicest I met this week end (the two at the back are from Boston - the same two women I was too shy to approach at the Chicago Airport!) the two in pink are from Orange County and I met them at the cocktail party on the first evening. And then it turned out they were all friends. They enveloped me in their little circle and it made my experience that much better.

small changes, small successes.

I had just experienced the first concrete encouraging sign in my journey of small changes.

I tend to spend the couple of days after chemo in pajamas. After spending all day pulling up my pjs, (the drawstring seems to have gone missing) it occurred to me that they might be getting too big. I pulled out a pair of pajamas that my parents had given me for Christmas that had been too tight to fit comfortably. I pulled them up easily and I'm wearing them now.

The thing is, this encouraged me to do something else that was healthy. As a pre-dinner snack, I had been considering toast or a granola bar. Instead, I had an orange.

I am inordinately pleased with these developments.

of freaks, friends, rebels, boobs and bras

Go see Jacqueline today. She shares an email exchange we had in December.

Jacqueline continues to innovate, create and dazzle (and I am planning to end up with a really good bra).

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

taking care of my body in 2009: part 3

My one New Year's resolution this year was to start "treating my body as well as I've been treating my mind." However, I decided that the best way to go about making these changes stick was by taking very small steps.

You can read my review of January here.

Here's how I did with February's goals:

1-Walk VIGOROUSLY for an average of one hour, five times per week (300 minutes a week).

I fell short by almost 300 minutes (or almost a week's worth of walking) this month. However, given the fact that I got the flu after chemo and that I travelled and attended a conference, I am not being too hard on myself.

I am also mightily impressed that I took breaks from the conference to walk (doing loops around the little track in the back of my hotel) on the non-travel days that I was in Texas. My walks have also become more vigorous and I miss them on the days I don't get out.

One of the things I learned last week end is that the body of evidence that exercise helps prevent the recurrence of cancer continues to grow. And studies show that all you need (in terms of cancer prevention) is 180 minutes a week. I am doing that, easily.

2-Eat seven servings of fruit and veggies a day.

I am struggling with this one but continue to work at it.

Another thing I learned at the breast cancer conference is that the consumption of fruit and vegetables does not seem to be as effective in terms of cancer prevention as scientists first thought. However, they do help prevent heart disease and with weight control (and there is a link between obesity and cancer prevention).

3-Cook dinner at least once a week.

I am doing pretty well in this area. I am also pleased to find that cooking is becoming more intuitive and that I don't always have to rely on cookbooks to figure out what can work.

I would like to cook more vegetarian dishes that my kids will eat, though.

4-Go to yoga once every week.

I went twice in four weeks. One week I had the flu and then, this past Monday, I was just too exhausted after attending an intense conference all week end and then arriving home after 1:00 in the morning.

This month, I'll aim for four times, which will mean making up for the classes I miss when we're in Florida (we are going to visit my in-laws in Sarasota).

5-Cut down on refined sugar.

I caved a few times (less than a dozen) and generally, only when the treat was really worth it. And when I was really hungry in the airport, I ate two oatmeal rains cookies. I do feel better when I don't eat sugar so I am going to keep working on this one.

4- Take my vitamin D and calcium supplements daily.

I remembered to do this about half the time.

I think I need to keep my goals very modest this month, in order to entrench the steps I have already taken. Our vacation, while therapeutic in other ways (if the kids don't drive each other and us crazy on the drive), will not be conducive to entrenching new habits. This month, I pledge to:

1. Do either 10 minutes (at least) of strength training or yoga with the wii fit or abdominal exercises every day (chemo recovery days excluded).

I'll start this one on Saturday.

And if I can get enough fruit and veggies and keep the junk food in the car to a minimum I will be happy.

While on the subject of nutrition, the Rowan Chlebowski, the oncologist who spoke about diet and nutrition at the conference said that the relationship between alcohol and breast cancer is a controversial one. And there seems to be no link at all between moderate alcohol consumption and recurrence. So I needn't worry about the occasional glass of wine.

Alcohol is, on the other hand, a source of empty calories and it increases the appetite. I generally try to save the booze for weekends and special occasions (which are admittedly fairly broadly defined) but with a vacation on the horizon, I think that in April I will look at cutting back in this area.

home

I arrived home from Dallas in the wee hours of this morning. I am exhausted but so glad I went. The 9th Annual Conference for Young Women Affected By Breast Cancer exceeded my expectations in every way.

I expect to be writing a lot about this later this week but I am so very tired and have chemo early tomorrow.

Meanwhile, here are some shots of folks gathered around for the group photo. Very many of us were hanging around above taking photos and I think we diminished the numbers a bit. There were 8oo women in attendance. Three hundred of us were on scholarship. It was incredible.

why yes, i have lost my mind

But I think I look very cute in my new pink cowboy hat (I am told that it's the same one that Julia Roberts wore in Runaway Bride - except hers wasn't pink). It's also really, really comfortable and it makes me happy. So there.

Thanks to Debbie from Journey Bags for taking the photo and emailing it to me. She asked me to let you all know that if you use Promotional Code 1208 when ordering from her site, you can get 10% off.

I think my hat is very Texas. And cheaper than new cowboy boots. And since I passed on the opportunity to go to a real cowboy bar and ride the mechanical bull, I thought I should bring home a little bit of the Lonestar State.

random travel observations

I decided when I was on my walk around the hotel grounds this morning that the complaining I did earlier made me sound very spoiled. The truth is that this venue seems pretty ideal for a conference and I am extremely lucky to be here (and I mean that in so many ways). It would be great if it didn't cost $3.25US for a coffee but it is what it is. And I am assuming there will be free coffee once the conference starts in earnest.

Yesterday was a very long travel day. I miscalculated and finished my book way too early in the trip. As a result, my notebook is filled with random observations I made as I sought to fill the time:

I always feel nervous and guilty when I go through security, immigration or customs. I feel like I am going to be "caught." This is ridiculous since I never lie in these situations or smuggle.

There are signs up at US Immigration stating that all travellers will have their hands scanned and photos taken. I only saw this happen to one person. He was an older white guy so not sure if this was random or some new kind of profiling I've never heard about.

You wouldn't know that the North American economy is in crisis, judging by the number of people who are travelling. Both my flights were full, with long standby lists.

My flight out of Chicago was delayed because the plane was struck by lightning. Folks were very upset but I kind of felt that I would rather have a safe plane than one that left on time.

I have never had a sandwich in an airport that didn't taste like cardboard.

One woman seemed to think that the airport was a great place to find a boy friend. In the waiting area in Chicago, I overheard the following conversation:

40ish Blonde Woman (flirtatiously): "Watcha readin?"

Attractive 50 something man: Mumbled title.

Woman: "Is it a Christian book?"

Man: "I suppose it is."

Woman: "That's what I had heard about it."

Man: Silence.

Woman: "You seem really interested. You just keep writing things down."

Man: "Just noting some things."

Pause.

Woman: "Do you live in Dallas?"

Man: Silence.

Woman: Launches into detailed explanation of where she lives. Mortified I get up and leave.

Some time later, after we change gates, I see them again. She is calling out to him, "Don't go away! I'm a catch!"

A few minutes later, she has moved on to another man. From across the waiting room I can hear her talking about going to church.

So - was she prosletyzing or cruising? Or both?

When I am desperate enough, I will read anything. Apparently this includes the in-flight magazine (this month's issue features the NBA) and something called Skymall. I found myself coveting this and this and thinking this was kind of gross. And then I felt guilty that I don't have anything like this to protect my neighbours from my unsightly air conditioner (but what would protect them from all the unsightly dog poo in my yard?). I could go on and on. And the prose in the catalogue was fantastic.

I was too shy to talk to two women I saw at the Chicago end of my flight who I guessed were going to the conference. I redeemed myself by greeting them as we waited for our bags in Dallas. They told me that they have been coming to this conference for six years. They promised me that I was going to have a wonderful time. They also told me that they are expecting 1,000 participants this year. Wow.

The "Networking Opportunity" I mentioned in a previous post is happening now. Time to take a deep breath, gather up my leis and head on down.

classified

I'm green and orange. As with previous events of this nature, I like to identify others who know what it's like to live with mets. I am also acutely conscious that wearing the orange may be every participant's worse nightmare.

suitcase stowaway

I am in Dallas (or somewhere on the edge of Dallas with only highway and hotels as far as the eye can see. The hotel claims to have seven acres of "park" with walking trails that I have yet to find or check out. Given that the restaurant with the "open air ambiance" is actually in a roped off area of an indoor courtyard and the spa and gym are in a separate building and charge a membership fee, I am prepared to be disappointed). This hotel is huge.

Please note the little friend that I found when I opened my suitcase. He's half of a pair of "sweater monsters" that were given to me by a dear friend. I think D. decided that I might be lonely on my trip. How thoughtful was that?

I am off to find coffee and breakfast. I've been up since 6.

random observations

observation #1: I am getting dumber and my kids are getting smarter.

My youngest son is undergoing some tests with a psychologist as part of an educational assessment. After his session, the psychologist showed us some of the non-verbal test questions, which involved pattern recognition. D. picked out the illustrations that fit the sequence in split seconds. I asked if he had seen these particular questions before. He hadn't. He's just quick and very, very bright.

The thing is that he answered these questions much more quickly than I could have, selecting the right answer while I was still puzzling it out.

observation #2: I derive almost as much satisfaction from making lists as I do getting things done.

I am going away tomorrow morning (I got a scholarship to attend the Annual Conference for Young Women Affected By Breast Cancer, in Dallas) for a few days. I spent a good part of the morning making a list of everything I need to get done. I love lists. Having several (what to bring in my carry on, what to pack and what I need to do before I go) has made me feel much almost as though my work is done.

observation #3: I am very anxious about attending a conference where I will know no one.

The truth is that I would rather speak in front of 1000 people than meet 100 people one at a time. The words "networking opportunity" scare me. I have been reminding myself that I need to have an open and friendly demeanor and that it's OK to bail and go to my room when it all gets to be too much.

observation #4: Having worked in communications does not make it easier to promote my own work.

I would rather sell a message or promote someone else then sell myself. I have had the same business cards (lovely ones that my older son made for me) for a year and have yet to make much of a dent in them. I am bringing flyers advertising my book, though and will at least put them on tables, even if I don't have the courage to talk about it.

observation #5: I get very excited at having time to myself and tend to over-estimate what I will have the time to do.

The weather will be warm in Dallas. And my hotel (we got great discounted conference rates) is far from anything touristy to do. It does have nice grounds, a nice gym, several pools and an outdoor restaurant, so I plan to pretend that I am at the spa in the hours before the conference starts. I am bringing knitting, books and workout gear. Lots of all of it.

observation #6: Homeland Security is going to have a field day with my suitcase.

Circular knitting needles (joined by flexible cables), pins (for blocking or shaping finished scarves on my extra bed) and a bottle of hair mousse. I might as well paste a sign on my suitcase that says "suspicious contents!". The Yarn Harlot says that her suitcase is opened and checked every time she goes to the States. Mine was only opened the one time I packed knitting in my suitcase. I think knitting needles look suspicious on x-rays.

Off to make some tick marks in my to-do list now.

I may blog while I'm away, if I can find free wireless in the hotel lobby. Can someone tell me why the cheap chains give you free wireless but the fancy hotels charge extortionate rates for slow access?

women with real influence

My youngest son came to see me in the kitchen this morning, while I was making school lunches (By the way, has there ever been a more thankless task in the history of parenting? I don't thinks so).

Me: "Your face is so clean! Great job!"

D.: "I washed my face!" (He shows me how he did it, miming vigorous rubbing.)

Me: "That's great!"

D.: "And I brushed my teeth. And I even flossed." (He mimes brushing and flossing.)

Me (impressed): "That is amazing. You are awesome."

D.: "I did it because at day care we are learning about the importance of good hygiene."

They have good teachers at the day care. And, apparently, their words carry more weight than mine do. Maybe I could ask them to talk about "the importance of being polite to his parents" or "the importance of cleaning up his toys."

when life gives you lemons

A couple of weeks ago (has it really been that long?), Nonlinear Girl, presented me (and a few other bloggers with the Lemonade Award.

What it's supposed to mean is that the recipients have been handed some lemons by life and have gone on to make lemonade. I love Nonlinear Girl's blog. I met her at BlogHer last year and have been reading ever since. She seems like someone I would hang out with if we lived closer to each other (she's in Portland and I'm in Ottawa), except that she's smarter and more talented than I am.

She's also expecting twins in a month or two. I am thrilled for her and in awe.

But back to the award. Recipients are supposed to tag ten other bloggers but I think I am going to follow Nonlinear Girl's lead and just choose a few bloggers I like, who write bravely, humourously and well about their lives and the obstacles they have had to overcome. There is no pressure on any of them to pass this on, I just enjoy them and think you will too.

So the award goes to:

Lene

Princess TinyButt

Sara

The Maven

bigger than the beatles

So Barack Obama is in my town as I write this. He has had a meeting with the Prime Minister, some lunch and then they took him for a beaver tail (deep-fried flat pastries) in the market.

Why am I embarrassed by this?

I can't help but think, though, that he would have enjoyed the beaver tail more if had gone skating first.

I hope he was advised to have the Killaloe Sunshine and not the Nutella.

Traffic in my neighbourhood is a mess right now, as I live on the way to the airport. I really pity anyone who had a commercial flight out of the city today.

asymmetry at the songbird branch

I have a post up at The Songbird Branch (a blog started by the brilliant Jacqueline) about my attempt to knit an asymmetrical sweater for my asymmetrical body.

Go check it out and the really beautiful items that have been found and made for the post-mastectomy body.

book review: "the widows of eastwick"*

I have a confession to make. Before The Widows of Eastwick, I had never read anything by John Updike (although, I did see the movie version of The Witches of Eastwick, which is sort of a prequel to this one. I'm not sure how faithful the movie was to the book. Given Hollywood's track record in this regard, I imagine the book and the movie were fairly different).

The Widows of Eastwick, picks up some 30 years after The Witches. As the title suggests, the three witches find themselves widowed, reconnect with each other and (after doing some travelling together) return to the earlier scene of their crimes. The mansion in which they partied as younger women has been turned into condos and they decide to rent one for the summer.

None of these women is very likeable, nor did I find it easy to relate to any of them (not sure if this was in part because I am so much younger - although I have read and enjoyed books with much older protagonists before). I did very much enjoy the writing, although I found that the dialogue was more an opportunity for the women to pronounce on the world, as opposed to really engaging with each other:

Jane looked aged in the harsh desert light, shrunken. Blue veins writhed on the backs of her hands. "There's this stink to the past," she said, "of magic that stopped working. It never really did work, of course. Just gave the priests more power than was good for them."

"If they believed it worked, maybe it did. It made them less anxious. As I remember us in Eastwick, we used to believe that there was an old religion, before men came in and took it over just as they took over midwifing and haute couture. It was a nature religion that never died - women carried it on even when they were tortured and killed."

The book is less about what is happening in the present and more about looking back to the past. The women are motivated by a desire to make amends for their crimes (causing the death, through witchcraft of a rival and of some other people who appear to have been thorns in their sides) and to relive their wild and powerful youth. The whole thing feels more like a padded short story than a full length novel. Some interesting things do happen but I found it hard to feel too interested.

As I was reading this book, I learned that Updike had died. I feel a bit guilty that I can't write a more positive review. I am very confident that this, the last of his novels, was not his best work by any stretch of the imagination. And perhaps I would be feeling less critical if I had read and enjoyed The Witches before reading this one.

Updike must have been grappling with cancer as he wrote this book and there is lots of talk of cancer throughout. The women killed their rival by giving her ovarian cancer and Alexa (one of the witches - the one played by Cher in the movie, I think) is obsessed with cancer.

I didn't hate this book. I just didn't really like it. I was expecting so much more.

Any Updike fans out there? How does this book compare to his other works? I would love to know.

*This is book was sent to me via Library Thing's Early Reviewer Program.