Tag Archives: waiting

Losing My Marbles in The Hope-Fear Continuum

On Friday I had CT scans of pretty much everything but my arms and legs to check the stage of my lumps and bumps as compared to three treatment cycles ago (that’s  just over two months ago.)  We’ll get the results Thursday morning, when I go in for my regular clinic appointment. 

Normally a head scan wouldn’t be included but I’ve been having some dizzy spells and frankly they’re freaking me out a bit.  Despite my best efforts, the words “brain tumour” crept into my mind like sneaky little spiders leaving clingy cobwebs of fear behind.   Reassuringly, my oncologist said that the problem is more likely related to circulation (it mostly happens when I stand up or get out of bed) but since I have a pretty good record of reporting symptoms that turn out to be indicators of disease progression, she’s not messing around. She tagged an “urgent” head scan onto my scheduled CT so we can get all the results at the same time. 

And so here I am again, trapped in the hope-fear continuum, as I always am whenever I wait for the results of tests like these.  No matter what I’m doing – working or buying groceries, talking or typing, listening or laughing – I can feel the almost magnetic tension between the poles of hope and fear.  It feels like walking a tightrope, where any slip can hurl me either into terror or wild optimism.

And this time in particular there’s a lot going on, pulling me in both directions.  There is the fear that the scans will reveal tumour growth or new spots, possibly in my (gulp) brain.  I’ve also noticed pain at the site of my original tumour, the one long-ago removed, and …is that a little lump under my arm?? 

But before I spiral down into the murky depths of Fearsville, let’s just shake off the slime of terror and foreboding for a moment and give the other end of the spectrum a chance.  Because there is also the lure of hope: pure and shiny and just as powerful a pull as the gravity of fear. And this time, offsetting the whirlpool suck of fear, I have to say hope’s got a pretty good leg-up. This time, I actually believe I have reason to be hopeful – dizzy spells and phantom tumour pain notwithstanding. 

Even though I’m superstitious enough to hesitate to blog it out to the universe for fear of jinxing myself, I’ve decided that I will share why I’m leaning toward hope because I also have a cockamamie theory that other people wishing for it too might help to make it come true.  So, here goes: I can feel that the lumps in my neck are getting smaller!  Its not just my imagination – my oncologist has on two occasions made a happy/surprised face and a little “Hm!” sound when examining me in the past few weeks.  (She is not the overly effusive type, so for her, I like to think “hm!” is the equivalent of jumping up and down and high-fiving me.) 

Anyway, I’ll know on Thursday. In the meantime I’ll walk the tightrope and try not to go completely mad.  Although I confess I’m rubbing my shrunken neck lumps like lucky pennies, and giving my brain and under arm lump 800-pound-gorilla status just by dint of the concentration it requires to not think about them.  

Luckily, I had a visit with my amazing cancer shrink yesterday, and he says “What-ifs” are strictly off limits.  No matter how positively you spin a What-if, reasons my amazing cancer shrink, it invites its opposite, thereby opening the door to anxiety.  And nobody wants to live in that house, located, as it is, in the reeking swamp of Fearsville.  So I just have to stay with what I know, which, right now, is …nothing.  Nothing is pretty hard to hold onto – but even if it’s not as great as good news, it’s still better than bad news.

Holding onto nothing… Oh my, my, my.  That’s the thing about cancer: you might beat the disease, but you’ll probably go crazy doing it.

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Fast Forwarding the Wait: Gattuso Rapid Diagnostic Centre

A few weeks ago, Georgia and my mom and I all participated in a commercial for a fundraising campaign for the Gattuso Rapid Diagnostic Centre at Princess Margaret Hospital in Toronto.  

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We had fun doing it and I’m a big supporter of the whole idea behind the Rapid Diagnostic Centre — that being to cut down the wait time between testing and diagnosis to one day.  Yes, just one.  Not the several agonizing weeks it usually takes.  Imagine taking that excruciating time-warped endless agony of wondering if you have cancer and smacking it right down to size?  Waiting for results is like your standard what’s-behind-the-door horror film scene: no matter what’s hiding behind that door, the scariest part is the eerie music and the slow, creeping, spine-tingling approach to the unknown evil lurking in the dark. I always have to fast-forward through those scenes. And basically that’s what the Gattuso Center will do for that slow, creeping, terrifying approach to the great unknown of a cancer diagnosis.

Of course it won’t always be good news behind that door. But, like in the movies, at least once you’ve seen the monster, you can start figuring out how to destroy it.

You can view the commercial here (at http://www.pmhf.ca/)

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CT Scan: Waiting For Results

We’re still waiting for results of the CT scans.  We made it through the weekend — the rainy, stressful, anxiety-sodden weekend.  Friday was Complete Meltdown Day, as if there’s anything productive about sobbing on my bed and asking my husband (and the universe) “Why does it have to be this hard??”  Neither of them gave me a satisfactory answer. 

Saturday was Exhausted and Depressed Day, but by Sunday we had kind of found our groove of Denial and Distraction.  

Now we’re mostly in the Numb and Calm stage, with a little glimmer of Hopeful and Determined: today I woke up to a sunny day and found that I actually believe that whatever the CT scans show, we will just take it in stride as best we can and get on with the business of beating this horrible thing. 

Which is not to say that I’m done with crying and asking impossible questions of the universe and my husband, but for the moment, no news is simply no news.  For the moment, as far as I’m concerned the cancer hasn’t colonized any new bodily territories and the neck lumps haven’t pushed their evil lebensraum campaign too terribly far.  And that’s good enough to get me through one more night.

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Getting Through A Bad Day

I must admit, I’m having a pretty rough day.  I’m completely preoccupied about the CT scan results (please let there be no more dragons!) I’m totally knocked out with low blood counts across the board, and the general effect is one of weakness and blubberingness. Pretty much whoever calls today is going to get a tearful earful from me, except my mom because she called while driving (hands-free, but still, as Bob Marley says, we don’t need no more trouble.)

But then, sometimes when I start feeling sorry for myself, I just have to look around and open my eyes to all the suffering that other people are forced to endure, and it gives me a little perspective. For example, I direct you to this link to a tale of incredible suffering and dignity in the face of outrageous circumstances. 

Wow, talk about a “perfect storm.”  I mean, that is just too overwhelming to contemplate.  

Just kidding.  What really does help me is all the encouraging comments and good mojo.  And barfing in the general direction of this Mischa Barton person.

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Hunting Dragons Again

Yesterday was one of those great days: In the afternoon I met my niece, who is perfect and amazing – just a miracle of life wrapped up like the world’s most beautiful burrito in my arms – and in the evening I ate lobster with a friend who always makes me laugh and inspires me, having herself recently kicked cancer’s a**.  Needless to say I slept soundly.  Smugly, even.

Alas, this morning I came screeching back into cold hard reality at full-speed – right back into the routine that somehow never becomes routine:

  • 9 a.m. needle to the port in my chest – check
  • Extraction of 6 colour-coded vials of blood – check
  • ECG – check
  • IV fluids & drugs for about 2 hours – check
  • Review bloodwork results with my nurse: all counts low, especially platelets. Am instructed to rest as much as possible, and to avoid getting any deep cuts or gashes. Cancel my sword-fighting plans this weekend – uh, check

This evening I’m scheduled for my first CT scan since beginning the clinical trial. They’ll scan everything from head to pelvis, looking for any sign of further metastasis (please, no more) and of course, measuring the growth of the ol’ neck lumps (please, no more than 20%). 

I’ve already choked back half the gigantic bucket of nasty chalk-juice, which, by the way, some jerk had the audacity to brand “E-Z CAT” – probably a relative of the jerk who came up with branding Fox News “fair and balanced.”  Now I shall proceed to eat everything in sight before fasting begins.  Then I’ll nap, if I can possibly quiet my mind, and later my husband will take me back to the hospital for the freaky sci-fi space capsule scan.

And then? 

Well, then we just wait. Probably until Monday. We wait and try to enjoy our weekend as much as possible, hopefully avoiding “deep cuts and gashes” or any manner of flesh-wound, and also trying not to think too much about the results.  This of course is like trying not to breathe too much.  

I really want to stay positive and only think of good things (my family, my new niece, lobster dinners) but the truth is I’m terrified.  Still, if there is something to know, I’d rather know it.  Can’t fight it if you don’t know it’s there, right?  And maybe there just won’t be any surprises.  Maybe the test drug is working, in spite of seemingly enlarged neck lumps, which yes I have stopped touching all the time.  Mostly. 

Anyway, on with the dragon hunt.  Again.

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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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Surprise Surgery

Last Thursday I got a call from my surgeon’s secretary who told me that they wanted to try “something else” before surgery & to come in Monday for another kind of biopsy. 

 

So yesterday my husband and I went to the hospital for the biopsy and were totally blindsided when they ended up doing the surgery instead. 

 

Surgery – like public speaking, marriage proposals or math tests – is one of those things I do better at if I’m mentally prepared.  I wasn’t, and it didn’t go so well.  They operated on me under local anesthetic, which meant I could feel them digging around in this hole in my neck and every time they went deeper I’d feel pain and they’d have to add more freezing.  It went on and on, and I would have given anything to have had my husband beside me, but in hindsight it was probably better that he wasn’t.  There’s nothing like an emotionally jacked-up and acutely protective Frenchman to throw a surgeon off his game.

 

After it was all over I asked them to show me the lymph node.  It was a little, cute, pink, not-gross, totally innocuous-looking, pea-sized thing. I’ve never hated the sight of something so much in my life.  I had the overwhelming urge to smash it with the nearest smashing-tool (those can be hard to find in an operating room) but I knew that it needed to be sent away and carved up and analyzed or we’ll never have peace of mind.  So I refrained from Jack Rubying the little @*#$. 

 

On the way home I took the prescribed doses of Ativan and Advil and we stopped for some spicy Salvadorian tacos & sugary Mexican pop.  (This combination, it turns out, is an excellent remedy for shock.  Keep it in mind should you ever find yourself having just gone through more than an hour of someone digging around in your neck while you’re wide awake.) By the time we got home and my mom arrived with our daughter in tow I had stopped shaking and was feeling pretty “normal.”  

 

Today I feel sore, exhausted and emotional, and like I need to hit someone, (probably the surgeon’s secretary who should have prepared me for the possibility of surgery.) 

 

We could be waiting up to 10 days for results. So the waiting game continues, and it’s excruciating, yes.  But on the upside this could still be nothing more than a bump (lump) in the road — and if things get too heady I know the Salvadorian taco place is within walking distance.

 

 
 

 

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The Wait

I’m waiting for the side-effects of Thursday’s chemo to kick in fully.  I can feel the deep aches beginning to build in my joints, like cruel little harbingers of what’s to come.  The waiting is a kind of mental torture – there is a feeling of helplessness knowing that the side-effects are coming and there’s just no getting out of their way. 

My husband has to be away this week on business and to say the timing is bad would be to understate it absurdly;  we both hate the idea of being apart through this time, knowing how difficult it was last time around, but we have reconciled ourselves to it.

The good thing is I’m not alone.  My mom has moved in to take care of me and help wrangle my daughter, and friends and family have dropped off food, or dropped e-mails and phone calls offering their help — assuring me once again in ways big and small that I am not alone. 

It makes a huge difference, this not being alone.  I know that I am lucky, even if that’s not necessarily a word normally associated with someone who has cancer. 

Right now, as I wait for the chemo to do its necessary evil, I’m thinking back to other times when the waiting was grueling: waiting for tests, waiting for results, waiting for the nausea, waiting to lose my hair…  Sometimes the not-knowing was maddening, even if finding out was more devastating. 

But I wasn’t alone during those times either – I’ve pretty much dragged everyone I love through every nuance of suspense and fear with me.  I have sent e-mail updates covering such turns of events as “Now it’s in the lymph nodes…” or “Now we’re checking the liver, lungs and bones…”  These were the missives waiting in the inboxes of my unsuspecting loved-ones from the very early days of my diagnosis.  I used a lot of detail describing tests.  I was almost perversely graphic and honest sometimes, using sound effects, like “schlook” and “ge-shunk” to vividly recreate the experiences of various biopsies. 

Not strong on subtlety, I admit, but I always felt that people could choose to stop reading if it’s too much for them, whereas for my part I need to share it.  Every time I put something out there, it’s no longer residing in me alone, building tension and choking me with fear.  Every time someone replies, whether with a quick word or a dissertation, it bolsters me.  I know for certain that I wouldn’t bear the psychological torment of these waiting games if I thought I was alone.

So my thoughts are with anyone else out there who is waiting today – for tests, for results, for side effects to kick in.  My wish for you is that you’re not waiting alone, and whatever may come, you won’t face it alone. Or, if someone you know is waiting I hope that you can find some way to show them that you are standing by them, because, at least in my experience, courage doesn’t come in a vacuum, whereas fear seems to thrive in one.

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