kitchen conversation (he's so, so right)

My spouse (after listening to lengthy rant #342 yesterday): "Not to excuse that person's bad behaviour, but a lot of things piss you off these days."

Me: "True."

Spouse: "Oh! We forgot to put the compost out!"

Me: (String of expletives, unprintable in a blog my children might read).

Spouse (Meaningful silence)

Then we both burst out laughing.

I need to get some perspective.

But at least I can still laugh at myself.

not really the end

Did you know that the world is going to end on May 21st, 2011? I saw a guy on a street corner today with a sign that said just that. And then I saw a big-ass caravan with the same message.

Contemplation of our impending collective doom helps to put yesterday's election into perspective. It doesn't matter if the Conservatives were gifted with a whopping majority if none of us is going to live long enough to deal with the consequences. There must be more of these end of the world types than I previously suspected. That would help me understand how it is that so many of us thought endorsing the Conservatives would be a good idea.

Or something. You'll have to forgive me, it's been a hell of a day. I stayed up way too late watching the election results and then stumbled around like a zombie all day. I'm delirious.

I even went across town to an appointment, only to discover that it's on Thursday.

It was a very odd feeling last night to watch the NDP take over 100 seats (the previous high having been 43) and not feel elated. Proud, yes but not elated. I just kept watching the Conservative and NDP numbers rise at the same time and feeling like my head was going to explode.

Those of us who oppose pettiness, meanness and bigotry and who support human rights and democracy (not to put too fine a point on things) have four years to get our act together. 

And I think we need to really start screeching about proportional representation.

Meanwhile, I really am thrilled that my party is going to be the Official Opposition. There is hope for the good guys (thanks, good guys, for working so hard to get yourselves and like-minded folk elected). I'm thankful to all the volunteers, staff and veteran politicians and candidates who worked so hard to make this happen.

And, even if I am slightly hysterical, I'm choosing to repeat the words of one of the surprised, young, brand new MPs from Quebec, "It's going to be all right."

i can relate to this...

...and so can, I would wager, anyone who has been harassed by  condescended to infantilized by dealt with an insurance company on health related matters.

Especially if you have been on long-term disability for any length of time, you can expect regular correspondence. Blogger Katherine describes this experience:

"But as sure as the swallows return to Capistrano, every March CIGNA sends me information on its Cancer Support program. Last year’s began “Good health is a gift.” This year’s reads like a grade school report:


Dear KATHERINE O’BRIEN:


The American Cancer Society estimates that two men and one in three women will face cancer in their lifetime. Although these are scary statistics, CIGNA HealthCare wants you to know we’re here to help…"

Most of us just sigh, groan, maybe yell a little and then toss the letters into the recycling bin (unless it is one of the letters making demands to send information we have alread sent them SEVERAL TIMES. Then we scream a little louder, call the company, get transferred to voice mail, leave a message and then never hear back, send the info as requested and then get ANOTHER LETTER requesting the SAME INFORMATION and scream some more. Or maybe that's just me.). After years of this kind of correspondence, Katherine decided to write back (CIGNA is her insurance company):

"Dear DOUG:


Thank you for your letter of March 2010! I couldn’t agree more that good health is a gift! I was blown away that you want to help me make the most of it.


It was gratifying to know that “as health care claims are submitted to us, we review them and identify steps you might take to help improve your health.” Gosh. I feel a little guilty. I mean, you are poring over my health claims and I am doing bupkis for you. Maybe I could clean out the coffee room fridge in Bloomfield some time? Police the parking lot? Just let me know.


As you might have gleaned from your research, I have metastatic breast cancer. My doctor says that in 2010, there’s no cure for metastatic breast cancer. Of course that’s what she said in 2009. So I do intend to doublecheck in 2011. I will keep you posted...


...I think it is important to take care of me, too. I see Dr. Gaynor once a month. It might be hard to see her more regularly than that. Unless she wants to join my mahjong group. I will make inquiries."

You can read the rest of the letter and Katherine's post about it on her blog, ihatebreastcancer. Thanks to Anna Rachnel (ccchronicles) of The Cancer Culture Chronicles for telling us about Katherine's letter via Twitter.

optimism tested

As we were listening to yet another story on the news this morning about how the Tories and the RCMP have barred people from attending campaign events (for things like having a photo of Ignatieff on their Facebook page or having been involved in an youth environmental organization), my spouse announced "It's going to work."

I was only half way into my first coffee, so I made him repeat himself. "None of this is going to matter," he said. "It's a story for now but it won't affect the election. The Conservatives will get a majority and then, next time, the other parties will have learned that hateful advertising and ignoring the truth are the best strategies to get ahead." (Forgive me, Tim, I'm paraphrasing. That's the gist of what he said)

I fear that he's right. Even the revelations about former aid Bruce Carson have barely affected the campaign.

Perhaps politicians have always said one thing and done another. These days, though, they barely have to pretend otherwise. And some, like Rob Ford in Toronto don't pretend at all. He's thoroughly corrupt, rude and uninformed. And people love it.

And then I learned that Bradley Manning, the 22-year-old U.S. Army Private accused of leaking classified documents to WikiLeaks has been subjected to torture in prison (Avaaz.org has a petition, if you want to add your name), despite the fact that he has never been convicted of any crime (not that conviction would justify torture).

So the message, boys and girls, is as follows. Telling the truth could lead to severe punishment but stealing and lying can only get you ahead.

It's enough to make any thoughtful person feel like ranting. Although I could never do it as well as Keith Olbermann.

Or Rick Mercer.

And please, if, like me, your sickened by corruption and lies and if you believe that a democratic government is a transparent one, please get yourself to the polls on May 2.

fat. not unfit.

I am overweight.

It's worth noting, that, even with years of therapy and a good feminist critical analysis, it still feels shameful to write that.

But it's the truth that as a result of genetics, too many diets started at too young an age (I was put on my first one when I was nine), too many emotional issues related to food and sheer laziness/inattention I am carrying around at least forty extra pounds.

Yet I wouldn't say that I'm unfit.

My cholesterol, blood sugars and blood pressure are all excellent. I have a resting heart rate of 66. And I have heart scans every three months (because Herceptin can damage the heart), so I know that vital organ is pumping along very efficiently.

I average 5.5 hours of cardio exercise every week. I run 3-4 times a week, for more than forty minutes. And, now that the snow is gone, my bike is my favourite way to get around town.

Yet, even people who know me sometimes express surprise when I mention that I've just been for a run. Or that I resumed running consistently a year ago. They are so surprised that many times, when I say "run", people hear "walk" (the fact that many people can walk as fast as I run is a separate issue entirely).

Neither my oncologist nor my GP are concerned about my weight.

And while I may not be fast, my endurance is better than lots of folks who are much thinner than I am.

So next time you see an overweight person at the gym, on the trail or on the bike path, please don't assume that they don't know what they are doing. Don't act shocked when they tell you they exercise regularly. Don't give them gratuitous advice on how to "start an exercise program" or "how to exercise safely." 

Fat does not necessarily mean unfit.

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.

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.

someone pour me a drink

A couple of months ago, I bought a sports watch at Zellers.* The clerk at the store convinced me to get an in store credit card, so that I could get a twenty-five per cent discount.

Against my better judgment, I agreed.

Fast forward to a couple of weeks later, when the bill arrives. Knowing that store credit cards have usurious interest rates, I pay off the balance in full immediately.

Fast forward to a few weeks after that, when I get another credit card bill, showing that I still owe the full amount plus interest.

Annoyed, I call the credit card company to complain. The woman on the other end of the phone was polite and helpful. She quickly identified the error, fixed it and told me to have a nice day.

Fast forward to a couple of weeks later when I start getting calls phone calls from “credit services.”

Now I'm downright irate. I call the credit card company again. The person with whom I speak this time has no record of my previous phone conversation. When I ask to have my card credited with the amount that I have already paid. He informs that's “not how things work.”

This is how Zellers proposes to resolve the problem:

They will send me a cheque covering the amount that I have paid them. And I will send them a cheque to cover my bill.

Allow me to restate this – Zellers is sending me a cheque for sixty dollars. And I'm expected to mail them a cheque for sixty dollars.

They can't just credit me with the money I've paid. I can't pay them online or over the phone.

Zellers and I have to send each other cheques for the exact same amount, so that they can cross in the mail.

At this point, I inform the agent on the other end of the phone that I want to cancel my card. He says that I have to call another number to do that and that he can't transfer me.

I place that call, cancel my card (“No, I say firmly, I do not want to give the company another chance”) and am then told that I have to call a third number to cancel the insurance on the card.

Nearing hysterics, I call the insurance people and am bluntly told (after being on hold for a while) that the insurance is cancelled automatically when you cancel the card.

My spouse will tell you that I am extremely tolerant (to the point of ridiculousness) of bad service, generally speaking. But this experience left me feeling that someone at Zellers needs to give some thought to getting it's act together.

*For readers out side Canada: Zellers is a large chain (like Walmart or Kmart). The Hudson's Bay Company just sold it to Target.

letter of the day

Yesterday, CBC Radio's Q featured an interview with Samantha King, author of Pink Ribbons Inc.

At the end of the interview, listeners asked the following questions (they were also posted to the Q blog): What are your impressions of cancer fundraising and awareness efforts? Are they working? Do you find any aspect of them troubling?

My sister-in-law, B. alerted me to the interview (she listens on the east coast schedule) and encouraged me to write a letter in response. This morning, a slightly edited version of this letter was read on the air (I was the "Letter of the Day"):

In January 2006, when I was 38 years old an the mother of two young children, I was diagnosed with very aggressive breast cancer. I underwent a brutal treatment regimen only to learn in November of that same year that the cancer had spread to my liver. I was told that I had “years, not decades” to live.

I resumed treatment and, this time, my response was immediate and dramatic – by June 2007, there was no longer any sign of cancer in my body. As I write this, I am still in remission. I'm also still in treatment, as we don't know enough about what happens when metastatic breast cancer disappears to make an informed decision about stopping.

I know without a doubt that I am alive today because of the kind of cutting edge research funded by breast cancer organizations. I also know that thousands of women who've been through breast cancer live better lives because of the kind of advocacy and outreach work that is undertaken by non-profit organizations.

But I do cringe, seethe and yes, even rant every time October comes around and we are deluged with pink products from fried chicken to face cream to key chains.

In theory, I'm not opposed to corporate sponsorship. But in the same way that I think cigarette companies should not be permitted to sponsor children's festivals, I'm offended when companies that sell products that are unhealthy, bad for the environment and laden with carcinogens jump on the “pinxploitation” bandwagon. At best, these campaigns do little to eradicate breast cancer and worst, they are a cynical attempt to grab some good PR and increase profit margins at the expense of anyone who's life has been affected by cancer.

Don't get me wrong. I don't judge anyone who's drawn to all the pink stuff. I own a lovely pink cowboy hat. I would just ask folks to think before they get swept up in the “Pinktober” frenzy. Put that pink soup back on the shelf. Step away from the pink sweater with the pink ribbon buttons (for so many reasons). Unless you really want the pink sunglasses, save your money. Most companies only give a tiny percentage of sales to breast cancer research. Why not make a donation instead to an organization that is demonstrably contributing to research, advocacy and especially prevention of all cancers? Then you'll know that you really are making a difference.

All the letters that the host, Jian Ghomeshi, read were on this subject and all of them opposed pinkwashing. Perhaps tomorrow will bring a deluge of letters taking an opposing opinion but it's good to see that more of us are speaking out on this issue that has driven me wild since my own diagnosis of breast cancer.

Cross-posted to Mothers With Cancer.

chronically whiny

I always think it's going to be different.

I say to myself, "This round of treatment, I will exercise and write and continue with my daily routine and see if that makes me feel better."

And thent, in the days that follow each dose of vinorelbine and Herceptin, I stay in bed too sick to do anything and lacking the self-discipline (motivation?) to try getting exercise, writing or going about my daily routine.

I don't even bother to eat well (although the soup I made the night before chemo was delicious and easy to heat up, so I did eat lots of that) or even do the easy things that might help (I was on the phone with my writing buddy and she asked if I'd been drinking hot water with lemon and ginger. Easy to prepare and she swears by it, yet I had completely forgotten).

I don't even drink enough water.

I just wait until the weekend when I know I'll feel better (unless I get sick, as I did yesterday and had to miss dinner with friends and my beloved book club).

I'm fed up.

Fed up with losing a week out of every month.

Fed up with having to constantly worry about my energy levels and not overdoing.

Fed up with not  having answers and having to worry.

Sometimes I amuse myself (and no one else) by announcing, "I'm done. That's it!"

But I don't really mean it. 

I know where I'd be if it weren't for all the chemo and the Herceptin. And I know that it's worth it.

And who knows? Maybe next time will be different.

a lapse in judgment

In the last couple of weeks, I have received two emails from Rethink Breast Cancer, an advocacy organization aimed at younger women. The messages urged me to by tickets for the Rethink Romp, a Toronto fundraiser and party.

I like a party as much the next girl and the idea of a superhero themed party made me smile. I love superheroes.

I eagerly clicked through to check out the "Shazamer", an interactive site where I could make my own superhero. At that point, the fun came to a screaming halt, as I read the words: "Show of your six packs and your great racks in support of Rethink Breast Cancer".

It's a great site, with some really cool interactive features but the model is built like Barbie and the "Superheroes" title bears the sub-head "with a great rack comes great responsibility."

The idea that a group of diverse, smart breast cancer advocates sat around a table and decided that this was a good idea is just inconceivable to me. Even more shocking is that this idea went from that table to a high profile, glossy campaign without someone shouting, "Hey wait a minute! Don't you all think this is a little insensitive?"

Yesterday, I sent Rethink this brief email:

Has no one complained to you about this?

A breast cancer organization talking about "great racks"? What if you only have half a rack or none at all? Can I still be a superhero if I'm not white [I did discover after I sent the note, that you can change the skin colour of the model, once you get inside the game but both the male and female superhero start as fair and light-haired] , with big boobs and able-bodied?

I love the idea and I love the spirit of fun and celebration to which you are clearly aspiring. I just don't understand how a group of breast cancer advocates sat down together and agreed that this is the best imagery and wording for this event.

So disappointed.

I haven't heard back yet. Rethink Breast Cancer has a great mandate and does good work. I love the spirit of fun they try and inject into their work. With this campaign, though, the organization has displayed a serious error in judgment.

super me
a one-breasted warrior
with really great boots
a rhea belle top
and some seriously funky accessories (thanks to Babz for that suggestion)
generous hips (the better to shoot from)
crows feet
and smile lines
honest
smart
strong
and always compassionate
but ready to kick ass
when she needs to.

well, hello there

Yikes!

It's been a while, hasn't it?

I seem to have lost my blogging mojo. I remember a while back when Average Jane wrote that her blogging had been derailed (my word, not hers) by Twitter and Facebook. I get that now.

Whenever I have a quick observation or a link to share, I can gratify myself instantly with Twitter (I'm lauriek, by the way). And while each tweet does go to Facebook and the sidebar of Not Just About Cancer (on the right - see it there?), it hasn't done much for my blogging.

I don't want to give up the blog though, so I'll try and re-commit to posting regularly (how's that for hedging my bets?).

On the cancer front, there is a little news. I loved having a break in April. That month also brought another clean CT scan. My oncologist continues to be happy with how things are going (or not going, really).

We talked a bit more with about the weirdness of being in ongoing treatment (with side effects that are cumulative, both physically and emotionally). He talked frankly (one of the things that I love about him) about how, in my case, he really has no idea what to do.

We don't know what would happen if I were to take a longer break from treatment or stop it altogether.

"You're a riddle, wrapped in a mystery, inside an enigma," he said, quoting Churchill.

He said that, theoretically, we could start our own clinical trial, where half the women stop treatment for three months and half continue as I've been doing.

"But then what do you say to the women in the first group, if the cancer comes back? 'Oops?' 'Im sorry?' " (I'm convinced that the man lies awake at night wondering about these things. His compassion is another thing I love about him).

He has a way of putting things into perspective for me.

I had planned on asking for another break in six months but he surprised me by suggesting I take a break in August (hooray!)

He also said that, some time in the future, he's not sure exactly when, he's going to feel ready for me to take a longer break. Meanwhile, I'll have fewer appointments with him and, unless I'm worried about something, I can call them in (another hooray!).

I am very pleased about all of this but I admit to also feeling a little blue. I'm still dealing with some of the "grey area" fallout. It's really hard to articulate (and I feel guilty for even complaining. Guilt would be a good subject for a whole other post).

Life is a funny thing. And it's really hard to plan even five years ahead, because you never know what's going to happen. I'm trying right now to return my focus to living in the moment, accepting what is and reminding myself to notice the good things.

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.

buckets of pink sh*t

If you've been reading this blog for a while, then you know how I feel about corporations selling pink crap in the name of "breast cancer." I even have a "don't buy pink crap" tag that use pretty regularly, especially in October.

There have been some pretty awful pink products sold over the years but in launching "Buckets for the Cure," KFC and Susan G. Komen for the Cure have sunk to what may be a new kind of low.

This stupefyingly bad idea was brought to my attention by Clergy Girl, in a post called "Buckets Of Saturated Fat For The Cure" over at Mothers With Cancer. She writes:

This was a sell-out Komen.  Did you ask anyone with breast cancer how they would feel seeing that big pink greasy bucket of chicken?  Was someone going to lose their job if you didn’t raise cash quick?  I really don’t get it?  Research also shows smoking and alcohol consumption are clear links to cancer, so why not team up with Marlboro or Bud Beer?  It’s not just about money, and quite frankly, don’t raise money on the backs of research that is clearly linking to cancer promotion.  Please!

Shame on Komen for lending it's name to this outrage.

how it's done

Everyone makes mistakes. And sometimes things go wrong that are not anyone's fault but someone has to take responsibility for making things right.

Over the last couple of years, I have come to realize that this is a deeply held value of mine, one I am trying to share with my kids. Mistakes don't necessarily make me angry but I can get royally pissed off profoundly annoyed when anyone - adult or child - tries to shirk responsibility. On the other hand, when people step up, acknowledge their mistakes and make a genuine effort to make things right, my resentment tends to evaporate entirely.

Some examples:

1. A few weeks ago, a received a notice from the Ottawa Public Library that a digital book I had ordered was ready for download. The same day, the library's new web site went live. When I tried to download my book - one I had requested months before - I found that all my requests had been deleted from the library site.

I was extremely disappointed. I immediately (and without much hope) sent an email to the library's tech department. The next day (a Saturday), I received an email informing me that they were aware of the problem and attempting to fix it. I was impressed with the rapid response.

The following Monday, I was sent another email explaining what had happened and that the problem had been fixed and informing me that I would be put to the top of the list for this book.

I was thrilled.

2. Last week end, my family ordered takeout from the Foolish Chicken. We have eaten there many times. Every experience has been extremely positive. This time, however, there was a mistake with our order.

We had ordered a ceasar salad with our family meal. When T. went to pick it up, he was asked if ours was the order with the ceasar salad and had confirmed. When we opened the boxes at home, though, we had a green salad.

I was tempted to let it go (the salad looked just fine to me) but S. had really wanted a ceasar salad, so I called the restaurant. My call was immediately transferred to the owner. He apologized profusely, explained what had happened (an order that was virtually identical - but for the salads - had gone out at the same time) and said that if T. were willing to come back and get the right salad, he would throw in some free dessert.

We were thrilled.

3. As I wrote in yesterday's post, I have asked for and received permission to cancel my chemo and herceptin treatments for April. However, when I arrived at the cancer centre last week, I discovered that my treatment for March had inadvertently been cancelled as well.

I went ahead with my bloodwork while staff attempted to figure out what had happened. Each person with whom I spoke (the staff on reception and the nurse who was trying to contact my doctor) made me feel as though they were working hard to get things sorted. A short while later, the woman who does the chemo bookings (someone I know to be extremely competent and accommodating) came to find me in the waiting room. She admitted, in front of a room full of people, that the mistake had been hers and that she had corrected it.

I was both relieved and impressed.

4. When I had my treatment that afternoon, the nurse administered the vinorelbine (the chemo drug, known in the US as Navelbine) right after the Demerol and Gravol (US readers know this as Dramamine). I promptly fell asleep. I woke up more than an hour later, thinking it would soon be time to go home.

Then the nurse came to hang my Herceptin, which takes ninety minutes.

Since the vino only takes ten minutes, I wanted to know what had been happening while I was sleeping. The nurse (not the same one who'd set up the vino) just shrugged and looked at me like she didn't understand the question.

I was too stoned and tired to push matters but I'm pretty sure that they'd just forgotten about me for a while. No one tried to explain or apologize and I was inordinately annoyed.

Mistakes happen. How we deal with our mistakes is what matters.

pictures big and little

I woke up yesterday morning with a sore throat and a headache.

Here we go again. Having a compromised immune system is no picnic. In the last year, I missed my Toronto book launch because of the flu, got H1N1 on the day the vaccine became available, was hit by Norwalk virus when my spouse was away (and found myself crawling along my kitchen floor with a can opener to "make dinner", got pink eye and more little flus and colds than I want to count.

Chemotherapy destroys cancer cells. It also destroys the cells that fight illness. Despite the fact that I try to limit my exposure to germs, wash my hands regularly, get enough sleep and eat well (not to mention the ten doses of Neupogen with which I inject myself after every treatment), I seem to fall prey to almost every little bug that passes my way (and when you have kids, lots of little bugs pass your way).

I am, literally, sick of it (I've also had benign paroxysmal positional vertigo. That had nothing to do with my immune system and was mostly just an annoyance. And when I realized that I did not have a brain tumour, I was actually kind of amused in a "of course this would happen to me at this point in my life" sort of way. Also, my golden, Emma, had a couple of bouts with geriatric vestibular disease, which I think is basically the same thing).

I need a break from chemo and I'm taking the month of April off. On the day when I would normally be at the cancer centre, I will be travelling home on the train from Toronto with D. (we will have been visiting grandparents, hanging out at the Bat Cave at the Royal Ontario Museum and the Harry Potter Exhibit at the Science Centre).

I'm not losing sight of the bigger picture, though. I have a CT scan today (abdominal and thoracic) and I am worrying about it. 

Because I always do. 

I'm fretting about my veins and how many times (and where) they'll have to poke me before they can inject the contrast but I'm also anxious about what the pictures will show.

Hopefully, everything will look normal and healthy, except for the scars that cover my liver. Hopefully, I can add this to my least of clean scans. And, hopefully, I can keep going through this routine, with the same results for years to come.

I haven't started to take the clean scans for granted. I doubt that I ever will.

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.

getting there the hard way (part 2)

When I left off yesterday, I was stranded at the Detroit airport, standing in a line-up for three hours waiting to re-book my flight to Atlanta. 

A very drunk young guy in front of me spent the whole time hitting on all the younger women in line (I was only brought into the conversation for affirmation, "Isn't she pretty?"). He also showed us the the alligator Crocs he'd bought for his young nephew (whom he called while standing in line. Not sure where his nephew lives but it was well after 10:00pm in Detroit) and asked if the shirt and tie he'd bought matched each other. Under different circumstances, he might have been endearing but I was well and truly done with him by the time we reached the front of the line.

At the 2.5 hour point, the woman behind me in line, who had been reading the Book of Ruth and worrying relentlessly about what would happen next, stepped out of the line and went directly to an agent - who served her and sent her on her way. There were some very disgruntled rumblings about this but I'm surprised to say that no one had a meltdown, or even complained to the staff. I was very impressive by the behaviour of the crowd throughout our frustrating wait.

And there were some folks around to give us perspective, chief among them the 6 year old boy who I did not hear complain even once. There was also a big guy who was sharing some beef jerky with his neighbours. I heard him say. "This is a pain in the ass but it's better than being in Iraq." Seriously. He went on to explain that he'd recently returned from a tour of duty.

It was around this time that I overheard an agent telling folks who had succesfully re-booked that they would be given a voucher for a hotel room, if their layover was due to mechanical failure but not if it was due to weather. When she then asked folks one by one which was the reason they'd missed their flight, I did my best to send them telepathic messages, "Say 'mechanical failure'!" - because, really, if no one is checking, why would you say anything else?

I knew that my own case was ambiguous, since my original delay had been due to weather but languishing on the tarmac in Detroit had sealed my fate - and in Detroit the skies were clear and there was no snow on the ground. I was fully prepared to argue my case when it was my turn to do so, to raise my voice, to threaten a blog post and even to play the cancer card. Basically, I was ready to stoop really low to ensure that my head would rest on a pillow that night.

It was after 11:00 by the time it was my turn.

I approached one of the two agents on duty. He asked me how I was. I took one look at his face and said, "I'm just fine. How are you?"

He replied that he was OK, just frustrated because the computers were now working really slowly, to which I said, "That's OK. I've been really patient until now, I can be patient for a few more minutes."

I thought at that point that the guy was going to burst into tears. He said, "You've been really..." then interrupted himself and concentrated on getting me out of town the next day. It took a while but when I left him I had a ticket on a 7:15 flight to Nashville the next morning, a connection to Atlanta, vouchers for a hotel room (no questions asked) and for breakfast the next morning and the reassurance that my suitcase would meet me in Atlanta the next day.

After getting lost trying to find my way to the hotel shuttles, I called the hotel listed on my voucher to find out how to get there. The voice on the other end of the phone told me they were full and I should go to the Quality Inn. I called the Quality and was told how to find their shuttle.

As I left the airport, I spotted the drunk guy from the airport. He was holding the free phone to hotels looking confused. I silently wished him well but was too tired to stop and see if he needed help.

I boarded the hotel shuttle as instructed, along with a lot of other punchy, exhausted travellers (we were sitting in a circle and someone started singing, "Kumbaya!"). Our first stop was a little Days Inn. I got off to confirm with the driver that he would be stopping at the Quality Inn. 

"You have to go here, Ma'am. The Quality Inn is full and all passengers are being re-routed here."

"But I just spoke to someone at the Quality Inn and she said to come on over." I'm sure I sounded petulant.

"I've been told to take everyone here, Ma'am but I'll call for you." He placed the call while I stood there and I listened as a hysterical voice on the other end of the phone shrieked at him that they were completely full, as she had already told him.

I apologized, thanked the guy profusely and got into yet another lineup in the lobby at the Days Inn. There was one person at the front desk and she was really flustered. She loudly announced that she was not at all sure she was going to be able to acccomodate all of us. As I stood at the back of the line, I felt tears pricking my eyes.

In the end, she did have a bed for me, in a smoking room (incidentally, this is the only time in my life that I have checked into a hotel room without being asked for any form of id or a credit card). I was hungry but also nauseated, so I skipped the restaurant which was filled with smoke (it  had also been a really long time since I'd been in a public place where smoking is permitted). I went up to my room, flopped down on the bed and turned on the TV just in time to watch Joannie Rochette accept her bronze medal.

The alarm went off 4 hours after I'd closed my eyes. I showered, dressed (from now on, I'm carrying clean underwear in my carry-on) and headed down to join a throng of bleary-eyed travellers in the lobby (my "free breakfast" turned out to be a tray of wizened, sugary pastries with a large sign overhead saying "Please do not smoke during breakfast." I was tempted to take a photo but didn't want to linger, out of fear of missing my shuttle).

The hotel clerk, a young man, was on the phone as I checked out, trying frantically to find another hotel shuttle. I gather that there were twice as many people in the lobby as had signed up for the airport shuttle the day before. After a couple of minutes, a shuttle was succesfully located - another instance of someone, who is no doubt paid minimum wage to do a difficult job, pulling out all the stops. I was impressed (and I emailed hotel management to tell them so).

The rest of my trip was uneventful. I sailed through security. Bought a latte and a new paperback book and read my way through my next two flights. I arrived at the hotel in Atlanta 90 minutes before the start of my conference.

I was very happy to be there. And way too relieved to complain when I discovered that my "city view" room looked out on a giant car park.

getting there the hard way

At the end last month, I attended the 10th Annual Conference For Young Women Affected By Breast Cancer. The conference was a wonderful experience, the getting there, however, was a traumatic experience.

The kind of experience that made me think that if I never see the inside of an airplane again, it will be too soon.

Please bear with me (or feel free to move on to more interesting places) while I rant. This is my story.

February 25

1-At 8:15am (my flight is at 11:15 and I live fifteen minutes from the airport but I have become paranoid extremely cautious about long lines and security), as I the taxi pulls up, I get a funny feeling in the pit of my stomach. I ask my spouse to check on my flight status. It turns out that it's been cancelled. The cab driver is none too pleased when I send him on his way.

2-Wait on hold for an hour so that I can re-book my flight. It turns out that the big storm in New York has caused many flights to be cancelled (I was scheduled to go via Newark). My new flight will take me via Detroit.

3-Leave for the airport at 1:30pm for a 4:30pm flight. End up waiting for half an hour for ticket agents to finish their break and check me in. I truly don't mind that staff take breaks. It is a little annoying when they are doing so in full view of lined up passengers. Couldn't they go have a coffee or something? Couldn't Delta have other staff cover breaks? Do they all have to go on break at the same time?

4-Clear security and proceed to the bar near my gate. Have a big beer and a sandwich. Given what follows, I end up being very grateful for the sandwich.

5- Settle in at the gate only to learn that my flight has been delayed by an hour. 

6-Board airplane and sit on the tarmac for 40 minutes as the wings are de-iced. I have a good book and lots of time to make my connection, so I'm not remotely worried.

7- Land in Detroit with an hour to spare beofre my flight to Atlanta. The flight attendant asks that all those with less than 25 minutes to make their connections be let off first. We then sit on the tarmac for an hour, growing increasingly anxious, as there is too much of a logjam to get to the gate.

8- Get off the plane after my connecting flight was scheduled to leave but note that the Departures screen indicates that my flight is still boarding. Sprint through two terminals and across the airport.

9- Arrive at my gate out of breath and with my heart pounding, to be told that a) my flight has left and b) there are no more flights to Atlanta that evening. I am directed to another gate to re-book my flight. The agent tells me that he has "no idea" whether I will be offered a hotel for the night. 

10-Try to re-book by scanning my ticket. When that doesn't work, I join a very long line,  in which I stand for three hours.

I've worn myself out just writing this. I'm going to go do something else now. I'll conclude this riveting story tomorrow. Do you have a travel horror story? Want to share it in the comments?

stolen content

If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.

I have filed a complaint under the DMCA (US copyright law) and hope to have the site taken down (or at least have my content removed) but since the other blog seems to be scraping all my new content, I thought I would create this special post just for them.

Thanks to Sassymonkey for alerting me to the problem, Elise Bauer for this excellent article and Susan Getgood for suggesting I write this post.