vote early, vote often

I watched last night's English language election debate with interest. I was shocked at how quickly the two hours passed, although this was greatly aided by the fact that I wrote and read a steady stream of commentary on Twitter and Facebook (sorry to my followers and friends who don't give a damn about the Canadian federal election!). It helped me to keep watching without blowing a gasket. I felt like I was at a bar with friends hooting and hollering, except that I was in my basement drinking tea with my son and my spouse (another advantage to Tweeting during the debate was that I had to keep looking down at my Blackberry. This kept the orange decor from searing my retinas and Harper's cold eyes from turning me to stone).

I thought that all the opposition party leaders did well. Duceppe delivered the best opening line ("Congratulations, Mr. Harper, for answering your first question from a citizen during this election campaign.") but petered off  towards the end. It's got to be brutal doing a two-hour debate in one's second language. By and large, I find it a pity that the Bloc only speaks for Quebec, as they are so consistenly solid on most social issues. They lose me, however, when it comes to questions of immigration and multi-culturalism. Nationalism and multiculturalism don't go so well together.

Layton was calm and measured and many people with whom I've spoken found his performance to be much stronger than in previous debates. Personally, I would have liked him to be a bit more aggressive, as he left it to Ignatieff to drive home the points that are near and dear to my heart. Kudos to him for mentioning proportional representation and for this seriously funny (but cheap) line: "I don't know why we need more prisons when the crooks seem so happy in the Senate."

I thought the evening, however, belonged to Ignatieff. He stayed on message (although I found "You shut down what you can't control" to be more effective the first time he said it than the tenth) and was forceful and articulate. He hit all the right notes on all the key issues and challenged Harper on gun control, immigration, crime, health care and transparency. He looked positively Prime Ministerial (my favourite Iggy line of the night, "This isn't bickering Mr. Harper. It's democracy.")

Is any of this going to change my vote? Absolutely not. I remember when the Liberals were in power and they were singing from a different songbook then. Happily, my NDP candidate is an incumbent who has done an excellent job, locally and for the country. I'll vote for Paul Dewar and I won't even have to hold my nose.

But if I lived in a riding where the race was one between the Tories and the Liberals? I just might be voting strategically this time around.

Perhaps none of it will make a difference though. All the pundits who did wrap-up commentary last night seemed to agree that Harper had won the evening. Even my beloved Chantal Hébert was unhesitating in her praise of Harper's performance. Did Canadians watching at home feel the same way? Did undecided voters? Do any undecided voters watch the debates?

I can't recall a time when I have felt as strongly about voting. I keep reading assertions that if all eligible voters under 25 and all women voted, Harper would be out on his ass.

Let's make that happen, shall we?

questions for candidates

From the Canadian Breast Cancer Network: Questions to ask your local candidates during the election campaign

 

Question 1: The Financial Impact of Breast Cancer

  

In May 2010, the Canadian Breast Cancer Network released the research report entitled Breast Cancer: Economic Impact & Labour Force Re-Entry, which firmly positioned breast cancer as an economic as well as a healthcare issue.

  

The economic impact of breast cancer is significant, and in many cases devastating for patients and their families. 80% of respondents experienced an economic impact following their diagnosis, often with distressing long-term financial consequences.

  

Some report findings:

• Average decline in household income was $12,000 or 10% of family income
• 44% of respondents used savings, while 27% took on debt
• One fifth of respondents returned to work before they were ready because of financial pressure
• Those who had chemotherapy had a greater loss of household income and were 49% more likely to take longer than 16 weeks off work

Survey respondents reported that the average duration of their breast cancer treatment was 38 weeks, and two-thirds of the respondents took 16 weeks or more off from work. Because Employment Insurance Sickness Benefits last for a maximum of 15 weeks, there was an average gap of 23 weeks during treatment without coverage.

  

If elected, will your government:

  

A. Lengthen Employment Insurance Sickness Benefits for Canadians undergoing treatment for breast and other cancers as well as other illnesses and chronic diseases that require long periods of treatment so that no one who is ill is penalized by the current limit of 15 weeks of sickness benefits?

  

B. Cancel the two-week waiting period for EI Sickness Benefits so that sick Canadians are not penalized?

  

C. Immediately extend the Employment Insurance Compassionate Care Benefit to cover family caregivers providing care to those with breast cancer, other cancers and other long-term conditions?

a. Increase the benefit to 75% of workers' earnings?

b. Increase the benefit period to a maximum of 52 weeks?

c. Allow partial weeks of compassionate care leave over a longer period?

d. Expand the eligibility criteria beyond imminent death within 26 weeks?

  

Question 2: Drug Approval Process in Canada

  

The drug approval process in Canada is lengthy and complex. Currently the performance targets as outlined on the Health Canada website is 300 days for "non-priority" drugs and 180 days for "priority" drugs.

  

Once drugs are approved by Health Canada, cancer drugs pass through the Pan-Canadian Oncology Drug Review (pCODR), formally the Joint Oncology Drug Review (JODR).This process can take up to a year for recommendation to be made. Provinces and territories may then either confirm or disagree with pCODR's recommendations, often resulting in further significant delays and an uneven patchwork of drug coverage across Canada.

  

Cancer patients in Canada face unduly long waits for much-needed drugs, and medications available in one province or territory may not be available in another. But when it comes to cancer treatment, especially for advanced or metastatic cancer, time is of the essence.

  

If elected, how will your government:

  

A. Ensure that the approval processes for new treatments are shortened to permit timely access to new treatments for those who need them

B. Ensure that no cancer patient in Canada goes without internationally recognized gold standard treatments

  

Question 3: Wait Times 

The Canadian Breast Cancer Network's 2008 Breast Cancer Wait Times in Canada Report Card showed that not all Canadian women are receiving equal access to breast cancer treatment. The project was undertaken in order to gather information about what happens across Canada in terms of wait times in four important areas: from abnormal screen to diagnosis, from diagnosis to surgery, time to radiation, time to chemotherapy.

  

We found some outstanding examples of best practices and much evidence that many jurisdictions across the country are working on innovative solutions to the wait time issue. However, the most disconcerting finding was that there are no national benchmarks for wait times and no standards for wait time reporting systems across the continuum of care. The data reported are calculated differently across jurisdictions making it impossible to compare wait times. This has not changed since 2008.

  

In the absence of comprehensive and consistent wait times data, there is no certainty that people diagnosed with breast cancer are receiving optimal care.

  

This is a complex issue. There needs to be national benchmarks for maximum wait times for diagnosis and treatment. Electronic health records must include consistent reporting of wait times across jurisdiction. Best practices must be shared and implemented across the country. Access to timely cancer care cannot depend upon ones postal code.

  

If elected, how will your government:

  

A) Provide the infrastructure necessary to ensure comprehensive and consistent standards for wait time reporting for breast cancer diagnosis and treatment across Canada

B) Ensure that national benchmarks are established for wait times associated with surgery and chemotherapy

C) Ensure the adoption of electronic health records

  

  

Join our survivor advocate campaign and make canada's decision makers aware of the issues that are important to you. Contact khurley@cbcn.ca for more information on how a little bit of your time can make a big impact.

giving in to the monkey brain

Herceptin

I think I'm happy with the outcome of the brouhaha over Herceptin in Ontario. For those of you outside the province or outside the loop. Jill Anzarut, a 35 year old woman undergoing treatment for breast cancer made the news last week when she announced that the province had to pay for Herceptin because her Her2+ tumour was less than one centimetre (that's about 1/4 inch) in diameter.

The province initially refused to budge but eventually caved after a massive campaign played out in the social and traditional media. Access to Herceptin will now much more room for discretion when it comes to providing access to the drug.

I feel good about this. It's not that I think that every drug should be funded for every person. Her2+ cancers are very aggressive and, as best put by Stephen Chia, chair of the British Columbia breast-tumour group, “In HER-2 positive cancers, it’s not the size that drives it; it’s the HER-2 gene that drives it.” 

Election

Canadians are once again going to the polls. I am not happy about this. 

I'm sad that the long overdue Bill C-389 protecting the rights of transgendered people will die before it gets the chance to be thrown out by the Senate.

I'm worried that we will end up with a Conservative majority.

I have election fatigue. There was a time in my life when an election would make me feel excited and hopeful. Now I just think, "Ugh."

Presents in the mail

Did you see my scrabble pendant in yesterday's post? My friend Leslie sent it to me after I told her I'd like to have on with my initial on it. It made me very happy to open the envelope that held my surprise.

The bad with the good

Last week, I received my author's copy of the current issue of Canadian Woman Studies. The theme this quarter is Women and Cancer and I have a poem that is part of a piece called "Seven Reflections on Breast Cancer by Seven Women Who Worked Together." I'm happy about that.

I'm far less happy about another piece I stumbled on when I was leafing through the issue. It's called "The Private/Public Split in Breast Cancer Memoirs." It was written by a woman who came to my book launch in Toronto and asked for permission to speak in order to seek contributions - something to which I readily agreed. She also asked me to contribute to the issue, which prompted me to reach out to my writing group.

I had no idea that she planned to write a scathing deconstruction of my book - but that's what she did. I know that all writers get bad reviews but I found her comments to be very critical of me as a person (I guess you can't seperate the analysis of a memoir from its author) and quite unfair. 

I'm sure how to respond or react, or whether I should do so at all. I've actually been unable to finish reading the article. With a distinct lack of maturity, I threw the journal onto the living room floor and it stayed there for several days. I only just picked it up, in order to write this post.

I'll let you know what I decide to do. Meanwhile, I'm pasting my very own contribution below. It's a very small part of a greater whole (and not the strongest piece by the seven of us by any stretch) but it's mine and, like all my writing, expresses a little bit of what has been in my heart.

Snap shots

December 2^nd, 2005.

When I close my eyes, I see myself as I was then.

Short dark hair and boots with heels.

Irritable and excited in equal measure.

I knew big change was coming. And it did. But it was not what I expected.

I was getting undressed when I found the lump.

July 1^st, 2006

I close my eyes and see myself as I was then.

Round, bald and bloated. But happy.

Chemo is behind me. Or so I expect.

I am self-conscious but also hungry.

I eat two burgers at the barbecue.

December 24^th, 2006

I close my eyes and see myself as I was.

I rallied for Christmas Eve but in the end the pain got the best of me.

My liver was riddled with tumours. And I had waited too long for the morphine.

My mother had to put me to bed. That comforted me.

And so did the drugs.

June 25^th, 2007

I close my eyes and I can taste

The strawberries on my tongue

The sensual pleasure of the whipped cream

And the Niagara ice wine as it slid down my throat.

I knew I would soon have something to celebrate.

December 16^th, 2009

I close my eyes so I can think.

I have now been in remission for 30 months.

And I will be in treatment for the rest of my life.

Some days I wake up celebrating.

Some days I grieve for what I have lost.

Today is a sad day.

Tomorrow will be better. Or maybe the day after that.

scoped

I once had a colleague who was a former Fleet Street journalist. I can't remember his name but I do remember a story he told over a particularly boozy dinner.

"The worst kinds of press releases," he said, "keep all the best bits for the end. That's just not how it should be done. It's like reading a news story that says 'A crowd gathered at Buckingham Palace today. There were also fire engines and ambulances. The corgies were brought out to safety. The Palace burned to the ground. The Queen is dead."

As I went on to work in communications, I kept that anecdote in mind and tried to make sure that the most important facts were kept in the lead of my news releases.

But this is not a news release and I can tell my story in way that pleases me.

I had an endoscopy yesterday.

I wasn't terribly worried when the secretary at reception couldn't find any record of me. I credit the Ativan for that. You still feel the anxiety but it's further away. Almost like it's someone else's anxiety.

She must have found me in the end, because I was called into the endoscopy unit, given an id bracelet and told to change into a robe.

The endoscopy unit at the Civic Hospital could use a facelift. The paint was peeling off the walls in the waiting room and the beds in the prep and recovery area are separated by curtains. My neighbour and I learned a lot about each others' medical histories and bowel movements.

Every nurse I spoke to was very taken aback that I should have metastatic breast cancer at my age.

Every one of the nurses was really kind.

The nurse who took my history and prepped me for the anesthetic noted my "crappy veins" but she got the vein accessed in one poke, so major kudos to her.

My bed was eventually wheeled into the room where the procedure would be done. At this point, I met Dr. A. for the first time. There was another doctor with him who introduced himself so quickly that I didn't catch his name. This second doctor, who I assume was a resident (why don't they introduce themselves as such? Residents always say, "I work with Dr. So and So." They never say "I am learning from Dr. So and So. Do they think the patients can't be trusted with this information? This really bugs me because I can always tell they are residents and I would be much more forgiving if they were honest with me) began to very rapidly list off all the horrendous risks of the procedure and then handed me a waver to sign. 

It's a good thing that I had done tons of my own research (and that I had taken the Ativan) because I might have demanded that they wheel me out of there.

Dr. A. asked me if I had signed the waiver and if I had any questions. I said, "I just want to get this over with."

I mentioned my strong gag reflex to Dr. Resident. He instructed the nurse (pompously? Am I being biased?) to give me some extra shots of the anesthetic spray for my throat (I had the distinct impression that the nurse was going to do this anyway but perhaps I am biased). Then they hooked me up to the drip, placed a plastic frame with a hole in it in my mouth and shoved a tube down my throat.

I then proceeded to gag, choke and gasp for breath. Tears streamed down my face. 

I'll never forget the nurse who gently held my head and spoke comfortingly to me.

It's amazing how big the endoscopy tube looked to me. There's no way it could have  been that big in real life.

I heard Dr. A. say something about how studies had shown that the gag reflex was greatly diminished when Fentanyl is administered.

I heard Dr. Resident sound surprised.

A nurse administered Fentanyl via my IV. And then I was really, really stoned (I just read that Fentanyl is 100 times more potent than morphine and I had a cocktail with other sedatives).

Not sure if I passed out or not but I was pretty woozy. I know they called T. to come and get me. And I know that one of the nurses suggested I try and get dressed.

I sat up and nearly puked. The nurse got me to lie back down again.

Lather, rinse and repeat a few times.

One of the nurses gave me some apple juice, which helped.

I asked what drugs I had been given. A nurse looked that up and said with surprise that I had been given a drug in the Valium family and Fentanyl. She said, "No wonder you're so wasted."

I heard someone mention Gravol (known as Dramamine in the US). I now understand why they give it to me each time they give me Demerol at the cancer centre. They gave me a barf bag.

I texted T. to see why he still hadn't arrived. He texted back that he was in the waiting room. I told him to come get me. He said that the secretary wouldn't let him past the waiting room.

If he wasn't allowed past the waiting room and I wasn't allowed to leave without him (nor could I walk on my own), we were kind of stuck.

One of the nurses went to get him.

Before I left, Dr. A. came to talk to me. He said that I am to come to his office in around four weeks, at which time I will get my results. He also told me that there were no visible tumours (see what I mean about burying the good stuff under a whole pile of details?).

I went home and slept for 6 and a half hours. It would have been longer if T. hadn't come into the room to check on me. I was pretty dopey all evening (giving all my online Scrabble opponents an unfair advantage) and hit the hay before 10.

My throat hurts today and I'm still kind of tired but I did get out for a run (it's 10C here today that's 50F), so I guess I'm recovering pretty well.

In a months time, I'll find out if the biopsies revealed any pre-cancerous cells. Or if I have celiac disease. And Dr. A. promised that if they don't find anyting, he's going to want to do a colonoscopy.

What fun.

women who care

A wonderful book was published this week. Women Who Care features stories of women's health care experiences - as providers and as patients. The book was the brain-child of Dr. Nili Kaplan Myrth:

In her third year of medical training - discouraged by how little focus there was on caring - a young woman was faced with a decision: she could throw her hands up and quit or she could risk speaking up and work toward change. She decided to send out a call asking women to share their experiences with health care and caring. Her e-mail inbox immediately overflowed with stories from women across Canada Together, this amazing group of women wrote Women Who Care.

The book was published by Pottersfield Press. I'm proud to say that an essay I've written has been included. It's called "Patient Personified" and it's about how the politics of health care have become intensely personal since I was diagnosed with breast cancer.

You can order the book through the publisher or your local bookseller (Octopus Books is carrying it in Ottawa). The books author's will be donating any royalties to the Women's College Hospital Foundation.

thank goodness someone's brain is working

I've been staying  up way too late and drinking too much coffee to compensate. Then I have trouble sleeping. It's a bit of a vicious circle.

As a result, I seem to be having problems jump-starting my brain.

The items in this post have no real connection, except that I found them on the internet and they were all drawn to my attention by local bloggers.

Zoom wrote about this lost cat. Is she yours? If her owners aren't found, do you have room in your home for this sweet girl? She's been taken in (and cared for) by the Crazy Cat Lady but she needs a forever home.

Nat got my blood boiling with this righteous rant (on why she won't "shut the fuck up") and made me laugh with this piece on Ottawa's ant plague (I feel so much better knowing thaat I'm not alone) and cry with her link to this amazing story about how a city helped a boy with cancer become a superhero for a day.

I don't know what I'd do without my virtual friends.

inside laurie's head

saying "no" to:

beating myself up

people who make me feel bad about myself

feeling ashamed

hiding from people who love me

giving into my fears

jealousy

Saying "yes" to:

spending time with the people who fill me up

reading for pleasure

tapping my own creative resources

trying new things

fun

talking to my Mom more often

giddy about:

all the great books that are available to read

the way my kids and spouse make me laugh until I cry

dog bellies and snouts

the potential of things I could knit

the thought that I am a Writer

scared of:

dying

not being able to read, or write, walk my dogs or play with my kids

writing fiction and discovering that I don't have the talent for it

anything bad happening to someone I love

deeply inspired by: 

beautiful prose

my sister

my friends

my kids

Lene

being in love

obsessed with:

the clutter in my house (not that I do anything about it)

wondering where the day goes

finding peanut and nut alternatives

thinking about things I could knit (as opposed to actual knitting)

tracking what books i read and planning what books i'm going to read next

Scrabble

in love with:

Tim

my boys

the dogs

feeling the sun on my face on a warm spring day

saved by:

blogging and my journal

world class health care

Tim

the people who love me

good chocolate

finding a reason every day to be happy.

and you?

Thanks to Mocha Momma and Dancing Mermaid for inspiring me to do this.

stepping in the right direction

On the Saturday evening of the 10th Annual Conference For Young Women Affected By Breast Cancer, a group of participants went out for dinner.

Many of us had not met before that evening. We came from Texas, California, Massachussetts and Georgia. I was the lone Canadian. It was a truly lovely evening. The food was great and the conversation flowed - from the trivial to subjects of greater import, from the general to the intensely personal.

About half-way through dinner, the subject of health care reform was raised. I said that, as a Canadian, I couldn't understand why anyone would oppose universal health care, especially anyone who has had a life-threatening illness.

Most around the table agreed with me, while one woman stated that she was resistant to any more government interference in people's lives. I soon found myself addressing the pervading myths about our health care system and was asked whether it was true that Canadians were cut off from health care when we turn 75.

I said, "No, that's not true and we don't have death panels, either."

The conversation was very respectful and never tense (unlike many, many other debates on this issue) and soon we moved on to other subjects.

And today, I want to congratulate my American friends for ignoring the fear-mongering and taking a significant step towards greater access to health care.

quality of life

I just returned from the 10th Annual Conference For Young Women Affected By Breast Cancer in Atlanta.

I am so tired I can barely see straight.

It was a terrific experience and I really learned a lot but I'm feeling too brain dead to share any of the many stories swirling around in my brain.

Instead, I'll share some notes I took from a presentation by Dr. Julia Rowland, director of the National Cancer Institute's Office of Cancer Survivorship, called "Living Fully Is The Best Revenge."

In particular, Dr. Rowland shared with us the "factors associated with quality of life outcomes" - the things that need to happen for those of us who have had cancer to live long and well. My editorial comments are in brackets.

1. Accessing state of the art care (well, yeah).

2. Social support (having it and using it).

3. Finding or having a sense of purpose or meaning in one's life.

4. Learning to express oneself.

I think that these factors apply to quality of life for anyone, not just someone going through cancer treatment.

I'll be back on the other side of chemo.

hello again

I'm back.

All is well here, I just used up all my writing mojo in November writing a novel (more on that experience in a future post).

Then I took a few days off to hang out with a wonderful friend and, well not write for a few days,

And while I was gone from the blog November 24th (the anniversary of my diagnosis of metastatic breast cancer) and December 2nd (the anniversary of the night I found the first lump) came and went. I noted both events in passing, took the time to breathe deeply and be grateful, and then got on with my day.

It's been four years since I found the lump. It's been three since the cancer spread to my liver. And it's been two and a half years since my first clean scan.

I had an appointment with my oncologist yesterday. I had nothing to tell him. He said, "Shall we keep dragging you in here every few months just to say 'hi'?"

I readily agreed.

I have chemo next week. They've been building a new treatment centre for what seems like years. I have often jokingly pointed in the direction of the new building and said, "They're building that for me."

Yesterday, I discovered that the new building is open and the chemo room has been moved. No more listening to the sounds of construction during treatment. No more listening to the intimate details of the constitutional issues of the patient beside me. There will be a little more light and a little more room and hopefully, a little less noise.

I'm kind of excited.

And yes, that is somewhat ironic. I have lived long enough to be excited about getting chemo in the new building.

frequent flyer

I had chemo on Tuesday. It was kind of a long day (I started with bloodwork at 8:30 and left the hospital at 3:30) which passed quickly due to the company of a really good friend. We had so much to say to each other that we needed the whole day to cover everything (except for when I was sleeping. The demerol/gravol combo really does knock me out).

It would have been an even longer day if I hadn't been on the receiving end of a little preferential treatment. At one point, the nurse who coordinates the chemo floor came out to reception and wrote on the notice board that they were running an hour behind schedule. I happened to be standing nearby and she caught my eye and said to me, in French, "environ" (approximately).

I was surprised, then, when my name was called a few minutes later. I passed the same nurse again, on the way in, and said, "That wasn't an hour."

"We squeezed you onto another team," she replied.

My friend, C. said, "Are you queue jumping?"

I smiled back. "It's the life-time membership."

down and up and some parentheses

Well, hello there.

It's been quite the week.

On June, 10th, I woke up with a sore throat. I didn't take my temperature until early afternoon, by which time it became clear that I was running a fever. I called the nurse who works with my oncologist (I'm supposed to do this, since I have a suppressed immune system, thanks to chemotherapy) and was directed to go to the emergency room at the hospital connected to the cancer centre.

I really, really balked at going but within three hours I was home with a prescription for penicillin (I think chemo recipients get fast-tracked through emergency these days). I was moved pretty quickly to my own treatment room (the most traumatic moments came when I was asked if I minded if a less-experienced nurse accessed my portacath. Within minutes, there were five nurses in the tiny room, in addition to my spouse and I. There was lots of fumbling and it took a couple of tries but eventually they got things working). After examining me, the doctor concluded that I was "a very sick person."

What was foremost on my mind, as I lay waiting for the doctor (in addition to the observation that having strep throat or the flu is nowhere nearly as scary as cancer), was that the Toronto launch for my book was supposed to happen the next day.

I spoke to my publisher but decided not to make any decisions that night, in case I felt better the next day (that was a mix of denial and delirium). My GP called the next morning to check in on me and said, explicitly what I needed to hear, "You are sick. Don't travel." (No kidding)

The publisher decided that morning that they would proceed without me. I was disappointed but understood completely. I sent out a few messages to that effect and went back to bed. When I awoke, I found out that the event had been postponed. I was pleased and sent out another round of emails, tweets and Facebook updates. I am sorry if I confused any of you with these messages (and even sorrier if you showed up for the event to find out it was cancelled).

Everyone at Women's Press was really, really kind to me and very sympathetic about all the scrambling they had to do at the last minute. I will post an update when we re-schedule the launch.

In other news, we had a sleepover involving eight 11 year old boys on Saturday night. My house will never be the same. What made us do this (other than love for our son)? More denial. It appears I am still very good at it.

I also took two extremely excited 6 year olds on the O-Train to the movie theatre. We saw Up. I loved it. And the little dervishes settled down and were mesmerized for the duration. It was the quietest part of my week end.

the shape i'm in

Chemo has left me uninspired.

Here is a link to a story ("Cancer labs no closer to national standards: Despite fresh doubts about tests in B.C. and damning report on Newfoundland scandal, efforts to set quality benchmarks are stalled.") from today's Globe and Mail that made me grumpy.

The quality and accuracy of cancer testing can be so uneven and no province has been exempt from error. The feds don't feel they need to take any responsibility for resolving the problem:

Federal Health Minister Leona Aglukkaq declined to be interviewed for this story, but her press secretary said in an e-mail the federal government will not become involved because "the regulation of pathologists and laboratories is a provincial and territorial responsibility."

If I weren't already feeling queasy, I would be now.

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.

still recovering from the concussion (and it wasn't even my head).

On Tuesday afternoon, I was at a craft sale doing some holiday shopping with a friend (who had booked the afternoon off to hang out with me). We had only been there about forty-five minutes when my mobile rang.

I was expecting it to be my spouse, wanting to consult about a present but it was one of the administrative staff from my older son's school. She told me that he had fallen and hit his head at recess. Some time later, he had told his teacher that he was "feeling weird" and she had sent him to the office. The woman who called me said she was worried about him but wasn't able to get much out of him, as he was "being very non-verbal."

Anyone who has ever met my son would never ever describe him as "non-verbal." I knew that something was wrong. When I got there a few minutes later, he was sitting there quietly. He didn't react much when he saw me and seemed to be having trouble speaking clearly (he did say that he didn't want to leave school because they were going to be building K'nex bridges. This was another warning sign for me - my son being distraught at the idea of leaving school). He was also disoriented and unsteady on his feet.

Once we were home, I consulted with Mr. Internet and came to the conclusion that I had to call the doctor. She got us to come in right away, and, after examining him, asked that we go immediately to the children's hospital. She offered to call an ambulance because she didn't want my son to be unmonitored during a potentially long drive (there is a transit strike in Ottawa right now and it has caused traffic to be very backed up during rush hour). Within a few minutes, four paramedics arrived.

We were bundled into the ambulance and taken to hospital. Poor S. had to keep getting his blood pressure taken and answer the same questions over and over again. The paramedics were really wonderful and I could tell that they were as relieved as I was when he went from not knowing what month it was to listing the items on his Christmas list (there are forty-five of them, including a flat screen TV and a Blackberry).

One of the paramedics told me that it is often this way with concussions that they can get better in the first couple of hours or much worse. We were all very relieved to see such a dramatic improvement.

He was so dramatically improved, in fact that when arrived at the children's hospital, we were no longer on the fast-track for treatment. By the time we saw a doctor (a resident, actually) hours later, my son was talking, cracking jokes and the headache and nausea had disappeared.

Diagnosis: mild to moderate concussion. Elapsed time between head bonk and being back at home: eight hours.

By the next day, S. had completely recovered and was giddy with the joy at the prospect of a day in his pajamas.

I on the other hand, am still exhausted. A concussion can really take a lot out of a mother.

against "the tyranny of positive thinking"*

"It is...widely believed that, once you have a cancer a positive attitude and a good mental state positively will affect the outcome of the disease..."

"Blaming the patient helps those who do not have the disease feel safe, and perhaps superior. If we can identify something the patient has done, or chooses to do, then maybe, the reasoning goes, then we will not get that cancer if we are careful. Hence our desire to find things in patients' lives that set them apart from healthy people.

...It may make us feel better at the expense of the patient but it simply isn't a reflection of the the truth."

Excerpts from "Cancer Is A Word, Not A Sentence" by Dr. Robert Buckman.

I listened to the tail end of a talk by Dr. Buckman on the CBC the other evening. It was called "Humour As A Coping Strategy or Laughter, The Second Best Medicine." His point was that, while humour absolutely does help us cope, it doesn't cure is or as he said, "Medicine is the best medicine."

I wish I had a transcript (updated to add that the podcast will be available on December 29th. Really worth checking out. I really enjoyed the part I heard and, ironically, found it to be very positive).

Laughter, love, friendship and a positive attitude can definitely help us cope with having cancer. Medicine, however, remains "the best medicine."

*This post is for my friend S., who coined that brilliant phrase.

Cross-posted to Mothers With Cancer.

meaner than fiction (and short-sighted, too)

According to a recent article in the New York Times, soon-to-be-Ex-President Bush is trying to ram through some changes to the Code of Federal Regulations before Obama takes office. Some of the new rules, which have the "force of law" in the US, would:

"make it much harder for the government to regulate toxic substances and hazardous chemicals to which workers are exposed on the job;"

"make it easier to build power plants near national parks and wilderness areas;"

"reduce the role of federal wildlife scientists in deciding whether dams, highways and other projects pose a threat to endangered species;"

"allow coal companies to dump rock and dirt from mountaintop mining operations into nearby streams and valleys;"

give "states sweeping authority to charge higher co-payments for doctor’s visits, hospital care and prescription drugs provided to low-income people under Medicaid."

Despicable.

If a fictional President in a novel or movie attempted to do these things in his last days of power, would we find it believable?

the opposite problem

I know several women who discovered they had breast cancer much later than they ought to have, because they were refused access to screening, their doctors dismissed their concerns or their breasts were so dense that tumours were not easily detectable by ultrasound or mammogram.

And then, today I read in the Globe and Mail that a new study coming out of Norway, revealed that some cancers will disappear on their own and that more sophisticated testing, such as the MRI, can lead to "overdiagnosis":

The study, published yesterday in the journal Archives of Internal Medicine, suggested breast-cancer screening may be leading to overdiagnosis, with about 22 per cent of cases likely to resolve themselves without treatment.

Once a breast cancer is found, however, it would currently be considered unethical not to treat it. So - if the theory is correct - large numbers of women may be having surgery, radiation, chemotherapy and other treatments that would never have been needed if their cancers had not been detected.

[]Radiation can damage the heart and coronary arteries. A previous randomized controlled trial showed that about one in 10 women who receive radiation for breast cancer will die from heart damage attributable to the treatment, he said.

In a telephone interview from Oslo, Dr. Zahl said that if he and his co-authors are correct, two women die from complications of breast-cancer treatment for every woman saved by screening.

"And that's a very bad tradeoff."

The study's authors argue that, since it is considered unethical to treat cancer once it has been detected, more aggressive detection can lead to unnecessary treatment that may cause more harm than good.

I was feeling a little uneasy when I read this article and trying to articulate why, when I read a response from Dr. Amy Tuteur (thanks to Jenny for the link). Her last paragraph was the clincher for me:

Finally, and most importantly, there is no way to tell the difference on mammography, or by any other technique, between the cancers that will disappear and the ones that will go on and kill the woman. Without a practical way to separate those who need to be treated from those who do not, the finding is intriguing and worthy of further investigation, but cannot guide us in determining the best way to screen for breast cancer and the best way to treat it.

It's hard, when reading this stuff, not to consider my own situation. My breast cancer was diagnosed after I found the big, hard lump in my right breast. The kind of cancer I have is aggressive, and by the time we found it, fairly advanced. If I had had an MRI and my tumour had been discovered before the cancer had spread to my lymph nodes, the chance of metastasis could have been much lower.

How would doctors know which cancers to ignore and which to treat?

Until we have the answers to those questions, this study seems to me to be meaningless.

And I hope it doesn't used as a reason to deny tests to women who are high risk or who suspect they might have breast cancer.

Cross-posted to Mothers With Cancer.

what he said

"I think we are asking the questions that will get us funded, not the questions that that will solve the problem."

- Lovell A. Jones, PhD, MD Anderson Cancer Center

(This was part of the closing key note to News You Can Use, organized by Living Beyond Breast Cancer. The conference was excellent but this last session, entitled "Helping Promote A More Equal Approach to Health Care", just blew me away.)

pregnancy and cancer treatment: more questions than answers

This past weekend, the New York Times published an article by Pamela Paul called “With Child, With Cancer.” I had to set it aside for several days before I could bring myself to read it. When I finally did, I was very moved, equally surprised and left with many unanswered questions.

I did not enjoy being pregnant. I was plagued with constant, low level nausea, heartburn and crushing fatigue for the duration of my pregnancies. I was also affected by what I later learned was ante-natal depression (this lifted almost immediately upon giving birth. My spouse swears that my first post-partum words were, “I’m so happy not to be pregnant anymore!” He exaggerates only slightly). I also found myself to be in a constant fog (not unlike the effects of chemotherapy) and that coherent thought was often just beyond my reach.

During those periods, deciding what to eat for breakfast was a challenge. I cannot imagine having to deal with the kind of life and death decisions faced by a woman dealing with a diagnosis of breast cancer while pregnant.

You can read the rest of this post at MyBreastCancerNetwork.Com.