Tag Archives: fear

23% Stat Clarified!

A big thank-you to everyone who weighed in & commented on the ‘23% chance of survival’ issue — I loved the story of a 9-years-and-counting survivor of Stage 4 HER-2 positive cancer on the Tell Her-2 website (thank-you Carol!) and had a few more amusing e-mails from friends, like the one suggesting that 23% of people are just talking out of their @$$es.

But this comment from Pam was the icing on the cake, the cherry on top, la piece de resistance

“I think the study that was referred to in the Ottawa Citizen was this one:
http://www.mdanderson.org/newsroom/news-releases/2008/early-stage-her2-positive-breast-cancer-patients-at-increased-risk-of-recurrence.html
It’s important to note that they refer to a 23% rate of recurrence for HER2 positive breast cancers NOT a 23% survival rate. Hope this helps!”

Oh it helps, Pam! Enormously, massively. Curtains for all but 23% of us?  Totally scary.  But a 23% chance of recurrence? Pfffft – whatevs, already living it.

The study’s statistics on recurrence and survival rates for HER-2+ vs. other kinds of breast cancers indicated what I already knew; that it’s not quite as rosy for us HER-2 types.  But it sure as heck isn’t as grim as a 23% vs. 90% chance of survival:

“In those analyzed with HER2 positive tumors, the five-year, recurrence-free survival was 77.1 percent; in contrast, HER2 negative patients’ recurrence-free survival was 93.7 percent. Five-year distant recurrence-free survival was 86.4 percent in women with HER2 positive tumors compared to 97.2 percent in women with HER2-negative tumors.”

I hereby apologize to the authors of the study for calling you hacks.  I was a little upset at the time.  I still remain steadfastly suspicious of all statistics, but I now realize you nice Texans were actually just trying to get women with early-stage HER-2+ cancer access to Herceptin, and I wish you every success in that noble pursuit.

There remains the issue of just how grossly irresponsible the Ottawa Citizen article was.  I’m trying to imagine myself as that writer, on deadline, trying to put together a positive piece about a new service for people with some kind of breast cancer that I’ve never really heard of, and oh! Look, here’s a study!  Let me see, should I report that there is a 23% chance that HER-2+ cancers are going to come back? Orrrr, hang on a minute, maybe if I just warp it beyond all recognition to say that only 23% of these people with HER-2+ cancer will live, that would be better.  Recurrence is just so, I don’t know… vague and neutral.  Death is so much stronger.  Yep, I think I’ll just go with death.  Great, all done!  And I still have time for lunch.

Rather alarming. Rest assured my letter to the Citizen to requesting a correction is already underway.  Thanks everyone for getting me through this darkness and out to the light at the end of the tunnel of incorrectly reported stats.  That’ll learn me to pay attention to numbers. I’ll stick to words from now on, they’re so much more reliable. Can’t put a number to hope and courage and chutzpah, can you?  I rest my case.

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Make That 50%

I don’t know how long the crocodile hunter thing is going to sustain me, so I thought I should ask everyone to give me their own versions of “23%” – bogus statistical probabilities to help me keep perspective on that nasty stat that threw me for such a loop last week. 

My husband volunteered that there is a 23% chance the average person would lose their mind before actually being able to understand statistical mathematics. My friend Sharyn said there is a 32% chance that the reporter who quoted the stats is dyslexic.  But the best by far was when she added that there is in fact no 23% — that it’s always and only a 50% chance for any of us — you either live or die, that’s it.  Smart cookie, that Sharyn.   I give her a 23% chance of getting all verklempt when she reads this. More likely she’s saying “That’s right. Atta girl.”

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Tell HER-2 Stick Those Stats Where the Sun Don’t Shine

You know what I usually do when something really upsets me?  I usually sit down on my kitchen floor and cry.  It’s not the most comfortable place to cry (that would be my husband’s arms) but I often end up there.  I seem to have a need to get low to the ground.  Get terra firma (or kitchen tile) under me so I don’t wobble and break like a teacup. 

I tell you this because I recently spent some time on my kitchen floor, right after reading this story in the Ottawa Citizen, which talks about a new program for young women with HER-2 positive breast cancer.  “Sounds great,” I thought.  “Maybe I’ll get involved,” thought I.

And there, smack in the middle of the article was this line:

“…it’s easy to see why HER2 is so feared: In a study last year at the University of Texas, women with early stage HER2-positive tumours were reported to have a 23-per-cent survival rate, compared with 90 per cent for breast cancer patients who do not test positive for the protein.”

Plop – straight to the floor.  Tears (big fat ones) and terror (also robust) ensued. How dare they?  How dare they just hit me with that 23% when I really and truly believed that I would beat this?  Believed it to the point that I publicly chastised anyone who didn’t believe it.  I more than believed it – I was full of conviction; I knew I would beat it.  And then, one little line in one little article sends me to the kitchen floor, my conviction shattered and my mascara all over the place?? 

Yes, actually.  That’s all it took.  Suddenly I was aware that my steely resolve and hell-bent determination are a little more fragile than I realized.

Slowly, the fatso tears became little spatters and then stopped altogether and reason – or my version of it — took over. I concluded that deeming the University of Texas researchers a bunch of hacks was appropriate.  As was feeling very unkindly toward the reporter who included that line in her story.  Thanks a lot, stupid no-cancer-having lady, for your blithe reference to these death stats concerning something I have to live with every day. Why don’t you go back to writing about five great picnic spots in our nation’s capital and leave me to my shattered optimism.

There – being nasty made me feel better already.  Next I went into action mode, pouring myself a nice big glass of wine and Googling all the statistics for various kinds of death, thinking surely it’s harder to survive car accidents and parasitic infections?

That’s when I found a story about that crocodile hunter guy. Yes, the crocodile hunter guy.  I know this sounds completely irrelevant, but stay with me:  There he was, Steve Irwin, cheerfully bounding around swamps and wrestling dangerous reptiles one day – then suddenly pierced through the ticker by a normally gentle sea creature the next.  He didn’t know what was going to happen to him when he went into the reef that day.  He probably had fewer reservations about swimming with those big portobello mushrooms than he would ever have had about hanging out in croc-infested swamps — and you can bet the stats for crocodile deaths are much higher than for death-by-sting-ray. 

Which is when I realized that statistics are for morons.  In reality, you can never know when or how you’ll die, you can only choose how you’ll live.  Some people wrestle reptiles, some wrestle cancer.  In the end, the obvious danger may not be the thing that strikes you down.  After all, that’s why I still wear a bicycle helmet.

So, thank-you dearly departed crocodile guy – I bet you never thought you’d come to the rescue of a Canadian girl with HER-2 positive cancer.  Life is full of surprises, and stupid statistics abound, but I am going to live.  This cancer is not going to win. I knew I cracked open the Australian wine for a reason.

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One Year Aniversary: Still Blogging & Buggering On

As those of you who have read the blurb that appears with my photo above may have noticed, I was originally asked to write this blog for the month of October 2008 as part of Breast Cancer Awareness Month.  Well, the website people never actually got around to amending that ”throughout the month of October” line, and I just kept posting, and here I am still blogging away one year later. As Churchill says, I just seem to “keep buggering on.”

I was wondering what to do for my one-year anniversary post… it doesn’t quite feel appropriate to put together a list of “best of” links to the most popular posts, since most of the ones that generated dialogue and comments don’t exactly commemorate the high points of my past year.  A round-up of my darkest moments or most tormented rants might be a bit of a downer, to put it mildly. Could be what my friends Chris & Nat would call a TBK (total buzz kill.)

But then again, that’s kind of the point of this blog: all this stuff happened in my life, and keeps happening, and a lot of it has been incredibly hard, but I’ve stuck it up on the internet for anyone to see – and somehow it hasn’t been a TBK. Just posting about what is going on has been cathartic, helping me to process so much of my experience. As my mom’s best friend Mary Sue (a 14-year survivor of breast cancer) once said on the subject of talking about fears: once you put it out there it’s not bigger than you.  So I put it out there, and then to my surprise and amazement, what I got back was wave after wave of insight, commiseration, empathy and encouragement.  Not to mention witty jokes and heart-wrenching tales to help me keep perspective. 

That there are a whole bunch of people out there reading this thing still amazes me, but that there’s a community of people who post comments and support each other (and me) is the part that really knocks my socks off.

To think I didn’t even want to blog about breast cancer when the idea was first suggested to me. I hated the thought of linking my identity to this disease, of becoming “Cancergirl.” And maybe on a more primal, superstitious level, I feared that if I blogged about it, I might be somehow inviting the cancer to stick around; I might be giving it more permanence than it warrants.

Now, a year later, I wonder what I would have done without this blog sometimes. I know my family, scattered all over the world as they are, feel like they can keep in touch with what I’m going through every step of this long road. I know that my friends tend to know what’s going on and can feel connected to me, just picking up the conversation from the last post, so I don’t find myself telling the same tale over and over again. And I know that a good chunk of the fear I faced was cut down to a much more manageable size just by the act of putting it out there. Getting it out of my head and into the blogosphere – the psychological equivalent of taking that stinky bag of garbage out the curb, where readers can take a few kicks at it themselves just for good measure – has made a huge difference.

So, thanks blog readers and blog commenters.  Thanks family & friends. And thanks, Chatelaine.

Now how about updating that blurb…?

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Resurfacing

Boy, that was a long nap.

I have been AWOL from the blogosphere and I apologize. I also offer my warmest thanks for all the notes & comments & check-ins & where-the-heck-are-yous.  I was off hosting a vegan yoga seminar at which I instructed participants in the art of blowing it out their third eye.

Just kidding. 

We escaped to my Aunt’s big, rambling house in the “crunchyside,” as Georgia calls it.  The weather was beautiful and there’s a big beach nearby, and it was just the sunny, beachy, relaxed family time that we needed. I even managed to walk 11K one day to get ready for next weekend’s big 60K Weekend to End Breast Cancer walk. 

After the shock of Wednesday’s news, I actually found myself feeling a deep, centred sense of calm on Thursday (and I wasn’t even sedated at the time.)  For some reason I was filled with the conviction that I am going to be fine.  I know that nothing is “fine” right now, but I believe it all will be eventually, and that I’m going to be ok.  It was bizarre, but I went with it. 

That feeling more or less carried me right through the weekend, until yesterday when I completely lost the whole calm, centred thing and morphed into a roiling receptacle of anxiety and fear.  It started because after a night of coughing I realized that an annoying little dry cough I’ve had for the last few weeks has bloomed into a constant and not-so little dry cough, sending me into paroxysms of cancer-panic:  Is this the handiwork of the evil lung-spots??  Are they spreading so rapidly that they will soon overtake my lungs completely? Oh my god, I am going to die!!

You know the drill.  Or can probably imagine it.  It’s not a good drill.

Luckily today I saw my cancer shrink, the Amazing Dr. Hunter, who made short work of my cancer-panic and talked me through a few other things besides.  And as I biked home from the hospital I could feel the calm and the conviction returning.  (Yes, feeling calm and centred even while biking home in Toronto traffic. He’s that good.)

I guess this is how it will go: having metastasized cancer will be like a particularly tumultuous and stupid relationship where I will oscillate between feeling confident, courageous and in control and becoming a total blubbering, freaked-out basket-case.  

And then I will dump cancer’s ass and move on with my life.

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There Be Dragons

In a recent e-mail my aunt referenced the old mapmakers who, when faced with uncharted territory, used to write “There be dragons.”  That’s how it feels as we wait for results from my bone & CT scans.  Scary, unknown, and forbidding.  I just find myself hoping there aren’t very many dragons.  

 

Then, just when I was about to post this, I read two comments that I had missed in response to my “The M-Word” post.  This is an excerpt from one:

 

I never in a million years dreamed this would happen to me….never ever expected that the monster would be inside me. Cancer was so not in my plans-I’ve been fighting to have my life back since last October…I may win this battle, but my innocence and my fertility have been sacrificed to the dragon. I am deeply thankful for everyday and every kindness and I know what every wish will be from here on out and now that I’ve met fear for real-I know what not be afraid of…and what to be – so I’m training and arming myself for the next battle, whenever it may come…next time I will be waiting outside the gate, sword drawn. (Although let’s hope it’s more like laser blasters)—posted by Jules

 

(Thank-you for the comment in its entirety, Jules. My friend Eden asked, “Do you just cry your face off every time you read the comments on your blog??” I do. I cry my face off. Total waterworks.  But in a good way.) 

 

OK so, kind of a creepy coincidence that both Jules and I were doing the dragon associative imagery thing – but also very comforting and strengthening to picture myself standing at the gate, sword drawn. 

 

Comforting, and then (because my imagination is about as sophisticated and easily contained as an untrained puppy) it descended into a nerded-out Dungeons-and-Dragons type fantasy, as I pictured all my friends and family and all the “sisters” in a Lord of the Rings-meets-Braveheart type scene: everyone armoured-up and ready for battle outside the gates of Mordor, wielding gigantic swords, faces painted, thumping at their chests à la Mel Gibson meeting the British army… I know I’ve cross-pollenated my genres but good god did I chuckle. Honestly, just the vision of my mom sporting chain-mail while trying to look menacing with a sword that’s way too heavy for her* — this alone is worth the drive to Middle Earth any day.

 

So thanks Jules for making me cry and laugh all at once – and for giving me some good positive spin on my “there be dragons” fear of the unknown.  Let’s hope the dragons aren’t too numerous or too ravenous, and when it’s all over they’re just a heap of scales and claws and bad smells at our feet. 

 

* Yes, mummy, I know:  No sword is too heavy for a mother protecting her child. I love you too.

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Testing, testing, 1, 2, 3…

Yesterday I went for the bone scan.  I already knew the drill: come in for the injection of radioactive tracer fluid (say it with me, just in case I didn’t already have cancer) wait an hour, and then lie still while a giant waffle-maker transmits images of my skeleton to a computer screen.  I confess I like the bone scan.  It is cool to see your own skeleton from head to toe.  It’s very sci-fi.  Plus it doesn’t hurt.

 

Unfortunately I have to wait until Monday for my CT scans, and even then we’ve asked my oncologist to get all the results before telling us what (if anything) these tests turn up.  So, likely end of next week sometime, we will know what we’re facing.

 

I’m trying to approach the CT scans and bone scan realistically.  My strategy is to assume that something will turn up somewhere; that in all likelihood, given that I found the lump in my neck because it was protruding, there will be things (lesions, tumours, groups of evil, hateful, unwelcome cells) in places I can’t feel them. The idea is to be mentally prepared so that if absolutely nothing else should turn up (can you imagine the relief??) I can celebrate, but if they find something I will have been expecting it.

 

Basically it’s a nice theory, but in practice it’s BS.  The truth is I’m scared.  When I’m not totally distracted by something else, I’m living in dread.  So I’m actually relieved that I have several more days to try to get my head around it, and even then I think it’s a tall order.

 

On the up-side, the clinical trial nurse called today to tell me that they have a place for me in the study!  Now I just have to go through the whole screening process and actually qualify as a subject… Yes, more testing.  That’s just my life right now, but if it means I’m going to have a chance at beating this thing, I’m ok with it.

 

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