i'll take it.

No nausea.

No bad taste in my mouth.

No rage or sadness.

No aches and pains.

I'm just very, very tired.

I'm not complaining.

third row from the top, second from the right

"gleeBE the Musical is the story of a group of talented, ambitious young people vying to get into the fictitious Arts Sanctuary school in the Glebe. GNAG’s spring theatre production, tells the story of their quest for this all-too-often elusive goal."

(Note: The Glebe is a neighbourhood in Ottawa, Ontario).

what if nothing changes?

Today is a treatment day.

For the first time ever, I will have Herceptin on its own (if you don't count the Demerol and Gravol I get to keep the shakes and fevers at bay).

Some people have almost no side effects with Herceptin. Some feel like they have the flu.

Will the fact that my body has such a strong response to Herceptin mean that I feel more of its side effects?

The break from chemotherapy is meant to help me heal and rebuild - physically and emotionally.

The break from chemo is also a risk.

Here's hoping it all works out for the best.

small changes: two steps forward...

It's high time I reported in on my plan to make small and lasting health-related changes in my life this year. 

It turns out that a small change every week is too much to expect, so I'm going to stop numbering them that way. It makes me feel like less of a slacker.

First change: Weigh in and record my weight every Monday.

My scale is broken and I have yet to have it fixed or replaced.

Second change: Do strength training exercises developed for cancer survivors. Work up to about thirty minutes, three times a week.

I've done these exactly six times in the six weeks since I last updated. It's too easy to talk myself out of doing the exercises. On run days, I tell myself that I'm too tired or don't have time and on non-run days I either don't think about it or don't want to do the exercises in my street clothes. I'm lacking both structure and discipline.

I've been pondering going swimming. I also did something last week that I may live to regret. I bought a twenty class fitness pass from a local gym. It only cost twenty dollars, and I have two years from the first class to use up the pass. It's pretty low risk but I'm worried I'm going to hate it.

At least it addresses the structure question.

Third change: Drink no more than five alcoholic drinks per week.

I seem to be better at breaking old habits than starting new ones. I've had no problem with this goal.

Fourth change: Drink more water.

My original goal was to drink around ninety ounces a day. That was unrealistic and made me feel hungry,jittery and even a little nauseated. Also, I was constantly running to the bathroom. Instead, I am now aiming for the more realistic eight glasses a day. This is no problem for me.

Fifth change: Meditate every day. Start at five minutes and work my way up to twenty.  

I suck at meditating. I just can't seem to still my brain, even if only for a few minutes. I find myself making lists, wondering what to do next, even mentally writing blog posts about how hard it is to meditate.

I suppose I should keep trying, as lots of folks I respect tell me how much they gain from their daily practice. It's a struggle though. I'm comfortable with silence. I don't tend to listen to my ipod when I go for walks or running but I do find sitting still and silencing my thoughts to be hard, hard, hard.

And see above re "structure" or lack thereof.

Sixth change: Always sit down to eat.

It's a very interesting experience to notice how often I pop food into my mouth while standing up. Sometimes, I only think about my plan to change after I'm done. But it's a good habit to break and I'm glad I'm doing it.

And announcing...

Eighth change: Take all my vitamins and supplements.

A while ago, I became so overwhelmed with the amount of vitamins and supplements that had been recommended for me that I just stopped taking any of them. The bottles were taking up way too much room in my kitchen cupboard and I couldn't find a vitamin box big enough to accommodate them all. I everything up in a box and put it in the bathroom in my basement.

Last Thursday, I found a giant pill box and spent half an hour on the week end getting organized. Yesterday, I took most of the vitamins (at different times throughout the day) and had raging heartburn by early afternoon. 

Today, I have yet to take any. 

I have recently re-connected with my nutritionist and we're going to review the supplements I'm taking, at an appointment two weeks from now. I'm also confused about interactions. Some vitamins should be taken with others and some shouldn't. Some taken with food and some not. Is it any wonder I put them all in a box in the basement?

Perhaps I should be setting priorities. What should those be? Calcium? Vitamin D? Fish oil? 

Anyone else out there have the problem of getting heartburn when you take vitamins?

As always, I welcome your thoughts and feedback. What changes have you made for your health in the last while? How's it working out?

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.

how i fill my days (for better or worse)

where i've been

Update: I've decided that my habit of using initials instead of names makes some sentences confusing and nearly unreadable. Henceforth, I will use my discretion - and mostly use names.

Hey there.

March has been a busy month for our little household. And last week was March Break. We all drove to Toronto and then our oldest, Sacha, went to visit two of his parental grandparents in Florida. It was his first flight (other than a short hop between Toronto and Ottawa) on his own (and he's now too old to be an "unaccompanied minor"). 

But I'm getting ahead of myself.

It seems that I'm not so great at multi-tasking these days. I have lots of blog posts in my head but before I write them, I thought I'd catch you up on what we've been up to since my last post.

On Saturday, March 12, I ran a bunch of errands and packed for our week away. We also went shopping for new clothes that my 7 year old could wear for a theatre date with his Grandma in Toronto.

He was very pleased with this outfit. The photo doesn't do him justice.

On Sunday, March 13, we drove to Toronto. That evening, Tim and I went out for a delicious Indian meal to celebrate our 20th anniversary (we celebrate the anniversary of our first date because our wedding anniversary is September 7. At that time of year, our lives are so busy. Besides, March needs a reason to celebrate). It's hard to believe it's been that long - and we still like each other.

I started my day on Monday, March 14 by lining up outside the Toronto office of Passport Canada, since we had realized the previous Friday (at 4:30) that our son's passport had expired (I can now safely confess this, as he has been and returned to Florida and you all can know that our parental ineptitude didn't lead to tragedy). I was second in line (well before dawn) behind a woman and her two young children from Northern Ontario who had been turned away from their flight to South Carolina the previous day (the woman's MP had assured her that her son could travel to the US on an expired passport. He could not). Her name was also Laurie and her boys were also five years apart. We bonded, as we stood on the pavement outside the passport building for 90 minutes.

Once the new passport was sorted, Tim and I took our youngest to the zoo (Sacha opted to go check out the  TIFF building with his Grandma). I didn't take any pictures but we had a great time. It's a sprawling place with animals that appear to be reasonably content. At least I hope so. Daniel was ecstatic. His favourite animals were the gorillas and the bats (no photos. I was too distracted and perhaps still groggy).

On Tuesday, March 15th, Tim drove Sacha to the airport in Toronto (I was happy not to go, since I was beside myself with anxiety) and then headed back to Ottawa to work (he was extremely patient with me as I texted him every forty-five minutes for updates).

I was happily distracted by the wonderful company of my friend Andrea We went out for brunch and then spent a few hours at the Purple Purl, one of my favourite places in the world. Andrea's spouse Patchen joined us for dinner and we three had a lovely meal. I was back at my Mom-in-Law's place before my seven year old who had spent the day with Grandma and gone to both a Second City kids' show and Billy Elliott.

On Wednesday, March 16, Daniel and I took the train to Guelph, where we hooked up with some cousins and went to the Butterfly Conservatory. Despite the heat in the building (I looked with envy at the folks who'd worn shorts), we had a great time. Besides the amazing butterflies (a gorgeous blue one landed on Daniel, to his great delight) there were many kinds of birds, fish and turtles.

Daniel and his young cousin Y. had some strong mutual admiration going on.

On Thursday, March 17, was primo cousin hanging out time. Daniel loved being the oldest cousin. Five year old N. (whose two older sisters were in Florida with Sacha) seemed equally pleased to have some boy time. 

I took the boys to see Mars Needs Moms in 3D (great animation, problematic movie) and then we went to a really great park. That evening, the boys entertained each other happily over dinner out (at Swiss Chalet - the pubs were packed with partiers dressed in green) and my brother-in-law and I had the chance to converse in complete sentences (my poor sister-in-law was at home recovering from a very bad case of food poisoning. She was more of a trooper that day than I would have been in her shoes).

On Friday, March 18, we returned to Toronto and I got to spend the afternoon and evening with my dear friend Leslie. We had lunch, browsed the Distillery District, went for a big walk along the Boardwalk and then had dinner at our favourite pub over pints. Meanwhile, Grandma took Daniel up the CN Tower and for a swim at the Y.

We took the train home on Saturday, March 19. We watched far too many episodes of The Magic School Bus  but not once did Daniel say, "How much longer?" or "Are we there yet?"

It was a very good week.

The last couple of days have been focused on re-entry - catching up with friends, going to appointments and making endless lists of things to do. As of this evening, Sacha is safely home. Tomorrow we can return to routine (bring on the fights about homework and cleaning up bedrooms). Whatever form it takes, a break from routine can be a very good thing.

now this could be fun

I've written before about the one major limitation of Herceptin - that it doesn't cross the brain-blood barrier. A couple of years ago (after meeting several young women with metastasis that had spread to the brain), I underwent a brain MRI. To my very great relief, there was no evidence of trouble but I think I'll will be requesting another before too long.

A few days ago, my friend Deanna posted a link to Breast Cancer? But Doctor...I Hate Pink and to Ann's take on the news that Viagra may help Herceptin to (ahem) penetrate the blood-brain barrier and thus help reduce the size of brain tumours.

 As Anne tells it:

"Herceptin, the wonder drug, has a flaw: it does not cross the blood-brain barrier. The blood-brain barrier was erected designed by nature to protect our brains from dangerous substances, such as bad viagra jokes, but what it means for cancer patients is that certain drugs can't get through to kill swollen bad cells. Herceptin cannot treat HER2+ breast cancer that has engorged spread invaded the brain. Apparently, if you add a big large generous dose of Viagra to Herceptin, it adds enough thrust power to break through that blood-brain barrier and bathe the brain in its heaving healing properties."

It's seriously interesting news but go read Ann's full post. It will make you laugh.
 
Cross-posted to Mothers With Cancer.

mixed. but good. i think.

And I'm not talking about the weather, which while it has been mixed, has been pretty consistently bad for the last twenty four hours. We had a big dump of snow (the photo above was taken from my front door), followed by freezing rain, which will be followed by ordinary rain.

Good thing I just bought rain boots.

My GP called me last week to let me know the results of my endoscopy (I won't get in to see the gastroenterologist until March 21st). All my results were negative - no celiac, no bacterial infection, no cancer. It's all good.

Then I talked to my oncologist on Friday. We discussed my scope results and my digestive symptoms (diarrhea, heartburn, abdominal pain). He expressed surprised that I was still feeling lousy on Friday after a Tuesday treatment. I told him that my recovery time had gone from four to six days and that last round, I'd felt sick for a week (this ended up being the case this time, too).

Then my oncologist said, "It's time to take a break."

I was floored.

I had been hoping to hear these words for months (years even) but when I finally did, I definitely had a mixed reaction. I'm being taken off the chemotherapy not because I've been in remission for a while (although I have) but because the chemo has started to take too big a toll on my body.

As Dr. G. said, "You can't stay on vinorelbine forever."

I'm going to continue with the Herceptin but take a break from the chemo for at least three months. Herceptin is also known to induce flu-like symptoms but I don't think it has the lasting toxicity of chemotherapy drugs. I'm likely to bounce back more quickly after treatments.

So we'll see what happens. There are no guarantees of anything and no promises. Every change involves risk.

But the next few months will be devoted to healing.

Cross-posted to Mothers With Cancer.

still ain't satisfied

Yesterday was International Women's Day and I marked it by keeping a therapy appointment and running a bunch of errands for my kids.

In yesterday's paper, Margaret Wente (whose column I avoid like the plague, as it's on the list of things that give me heartburn) wrote a column entitled "For the free, educated and affluent, welcome to the decade of women":

"In the West, International Women’s Day doesn’t mean much any more. It’s little more than a marketing opportunity for businesses, or an excuse for the last remnants of women’s grievance groups to keep griping."

Setting aside the erroneous and offensive assumption that any woman reading the Globe in the western world is "free, educated and affluent", Wente's assertions are just plain untrue.

In "Why International Women's Day Matters", Emma Woolley has written a brilliant rebuttal. Go read it. It will only take a minute and it's very good.

Woolley also posted a video that was circulating yesterday, featuring Daniel Craig and narrated by Dame Judi Dench. I'll share it here as well. It's called Equals and it provides the best rebuttal of all.

On a lighter note, Daniel Craig makes a damned attractive woman and I am crushing on Judi Dench.