Tag Archives: side effects

I’d Rather Be Eating Chocolate

If Forrest Gump says life is like a box of chocolates, I say chemo is like a row of cubicles in a public washroom: You never know what nasty surprises you might find when those doors swing open – but when you gotta go, you gotta go. Alas, my most recent round of treatment was more like opening a cubicle door in a bus terminal ladies’ room than one in a high-end restaurant. In a word: vile.

The truth is, I was caught off-guard by the nastiness of this chemo. My previous two rounds with it had actually gone fairly well (relative to just how unwell chemo can go) and when asked I would say, “This isn’t the worst chemo I’ve met.”

But, to mercilessly belabour this toilet analogy, even if you’ve previously visited a particular public washroom before, there are no guarantees you’ll find it in the same condition you did the last time you were there.  In other words, just because I’d had a fairly good run at this chemo before, it didn’t mean I could expect it to go well again.  It’s a, well… a crapshoot.

So this time around the nausea has been aggressive, as were the flu-like symptoms for the first few days. But the worst and weirdest of all is a super-intense back pain behind my right shoulder. It feels like I have a little knife lodged there, and every time I cough it twists in a little deeper.  It started Friday morning with a sharp pinch on my right side every time I hack-hacked, or bark-barked.  By late afternoon I was clutching my side and doubling over a bit with every cough. By bedtime, the pain had intensified, migrated around back and set up permanent residence, and I was sleeping with a heating pad under my right side.

It seems that my evil cough, not content to torment me with mere anxiety and irritation, has now added physical pain to its roster of tricks.  So I cough on, and while the pain isn’t unbearable, it does make me stop, clutch, bend, and brace myself with every hack-hack or bark-bark. But the real problem is the psychology: every time I cough and the knife twists deeper, I’m acutely aware of my illness.  Instead of being able to amble through my days without having to think about cancer all the time, symptoms like this one serve as a little cancer reminder every few minutes.

I don’t like this. Denial is one of my oldest and trustiest friends.  Moving through my daily life without having every waking thought coloured by cancer is a state of being I’ve come to depend on for my sanity. When side effects and symptoms are front and centre (or around back to the right, behind the shoulder blade) the psychological effect of constantly being reminded that I have cancer is compounded by physical pain and discomfort… and frankly it stinks.  Really, it does.  Please don’t tell me to keep my chin up, either. You can grin and bear it, I’m going to slink around muttering obscenities and popping pills.  

On the other hand, I may just be imagining the link between my cough and my cancer.  I say this because when I discussed my worsening cough with my oncologist last Thursday before treatment, I found out that the prevailing theory continues to be that the cough hasn’t really corresponded to “progression of disease.” In other words, it has sometimes been present when no lung specks were visible on CT scans, and at other times it hasn’t bothered me much even though scans showed progression of spots or specks – so it’s hard to reason that the cough is definitely tied to the cancer.  There is still a strong belief that it could be caused by lung irritation due to something as banal as post-nasal drip (i.e.: my constantly runny nose) which itself was caused by long-term chemo side effects. Therefore, so goes the rather optimistic prevailing theory, I shouldn’t worry too much about the cough, at least not until or unless the results of my upcoming CT scan on February 23rd give me reason to. 

Okay… Still hurts though, so what’s a girl to do? Maybe if I can block out the psychological stuff, the physical experience might be more bearable. Like facing a disgusting public toilet in a desperate situation, you just hold your breath and get through it, with your eye on the prize and your nose plugged. 

Yikes. Would so much rather be dealing with the chocolates. 

  

*Ladies: A quick word, please, while I have your attention, on the matter of hovering or sitting on pubic toilet seats.  Before I had a little girl I didn’t have to think about it –  hovering was my default, whether five-star establishment or basement dive. But now that I have to actually place Georgia’s pristine backside on those seats, let’s discuss.  One hovers to avoid sitting in a nasty pee-splashed bacteria-ridden mess, right?  But consider:  how did it get pee-splashed in the first place?  I’d wager it got that way from careless hovering.  If you find it splashed-upon, go ahead and hover, but if you find it clean and you hover, you MUST wipe.  Careless hovering perpetuates the need for hovering.  If (as the saying goes) you sprinkle when you tinkle, I beg you to give it a wipe. Please, for Georgia’s sake.

 

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Postponing the Pity Party

It was a long, long day at the hospital yesterday and I am totally knackered.  I came home and rested a bit and then my husband and Georgia stormed the premises, but thank god Georgia’s godmother came over too, to help wrangle the Whirlwind.  The Whirlwind was actually in quite the difficult mood – she was certainly not going to be nominated for any behavioural awards last night – and that’s enough to wear you out on any day, let alone one that involved seven hours at the hospital. In fact, we’re pretty sure last night put the godmother’s child-bearing plans back by at least six months…

Nonetheless we managed; we made it through dinner and bedtime without too much additional drama. Very shortly after Georgia was tucked in for the night, I too said good night and headed up to bed.  As I was climbing the stairs I had one of those thoughts – the kind that have the power to bring you right down and leave you smack in the middle of darkness and devastation if you let them:  “When did this become my life?  How did I get here — to this life full of cancer and exhaustion and sickness and stress — from that charmed, beautiful life full of privilege and blessings…?”

This is known as a Pity Party. Or as the start of one.  It can spiral right out of control, leading to tears and trauma. Orrrr, you can snuff it out like an offensively over-scented votive candle.

It’s not that it’s not all true:  I did lead an extraordinarily happy and blessed life — not one totally devoid of challenges and pain, but pretty darn good all around, pretty much right up until I got hit with the cancer stick. Yet despite appearances, I kind of think my life continues to be incredibly good. I may not be the luckiest person alive, but I have a really good life.  And it turns out that some rather previously-unimaginable blessings have come from this experience of having cancer.  (For more on this, you can refer to earlier posts questioning the idea of cancer as a “gift.”  I’ll save you the suspense: I don’t believe for a second that cancer in itself is a gift, but it does bring with it some undeniable silver linings.) 

Anyway, I had just reached the top of the stairs when another voice interrupted the Pity Party Planner’s escalating lament, “When did my beautiful life turn into this constant, unending battle…blah blah blah…” with a firm “Well, it may not look as rose-coloured as once it did, but it is still your life.  And it’s actually not a bad one.  Have you seen Haiti lately?  How’d you like to pull your child out of the rubble?  Get a grip. You’ve got cancer and you have to live with it.  Live being the operative word.”

It can be such a ball-buster, that other voice of mine.  But it certainly did the trick.  Snapped me right out of my downward-spiraling, woe-is-me mood. By the time I was brushing my teeth, I was thinking back at our warm, familial evening and the love and laughter that flowed so easily in and around the eddies and crests of Georgia’s hooliganism; at our delicious dinner of take-out Japanese food in our great house, and the conversations and connections on a million levels between we three old friends; even at Georgia’s absolute certainty of her rightful place at the centre of the universe.  Just before switching off the bathroom light I caught a glimpse of myself in the mirror and I had a half-smile on my face — I knew it was true: my life is still blessed. A bit chaotic, battle-scarred, and full of dramatic ups and downs, but definitely still blessed, at least by my measure.

Pity Party postponed.  That other party, the celebration? Definitely still on.

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The Invisi-Brow? Been There, Done That

Yesterday’s Globe and Mail featured a preview of the upcoming trends for 2001 in its Style section.  Generally – not being of the mind that style and trendiness are synonymous – I could give two flying hoots about the latest trends. In fact, as I read about the “…cheeky bras over t-shirts…” gracing the runways, all I could think was, Will you please give me a break? Do I want to look like I have underwear dyslexia?

But I was reading the Style page for a reason: because when I picked up the paper, something caught my eye.  Or my eyebrow, I should say.  The banner on the front page encouraged me to check out the Style section to “get set for the year of the invisi-brow.”  Yes, the invisi-brow. As in, no eyebrows.  Models, apparently, are bleaching or otherwise disappearing the fuzzy little caterpillars that reside above each eye in what is giddily billed as “surely the edgiest make-up trend of the season.”  Yeah, okay… or, Surely the most inane, pointless and desperate trend of the season.  (Followed closely by those cheeky bras over t-shirts.)

What to expect next from these daring denizens of the fashion world? The year of the plucked-out eyelashes? Perhaps a celebration of the bikini-ready chemo-zillian, just in time for beach season? (Actually I confess: that one I did count as a cancer perk…saved so much money on waxing!) I feel like writing to the Style reporters to inform them that, avante garde trend-setter that I clearly am, last year was my own personal “year of the invisi-brow” and frankly, it completely sucked.

Or, maybe I’m looking at this all wrong; maybe I’m just bitter because last year when I was bald and blinking dust out of my lash-less, brow-less eyes, nobody thought it was particularly chic. Perhaps I should cut this little clip out of the paper and pass it around the chemo ward on Thursday for all my browless chemo compadres and see what they think. After all, having the fashion world declare a common chemo side effect edgy and desirable might make people feel better about hair loss, if only in that one localized area.  

And anyway, I should be looking for silver linings: it’s entirely possible I’ll be joining the hairless ranks once again – I’m shedding like a husky in July. Though I cringe and get a little teary-eyed at the mere prospect of losing my hair and having that bald cancer-face stare back at me from the mirror again (telling me every day how sick I am) if it must be, so be it.  Time will tell.  If I go bald, at least I know I’ll endure it.  Hell, I may even figure out a way to own it this time – anything to avoid it owning me again. 

Encouragingly, my oncologist says it’s unlikely I’ll lose my hair completely, but she’s not cleaning my hairbrush every day, or seeing my pillow every morning… Mind you, I’ve got lots of it, so I count myself lucky; with what I’ve lost so far, some people would already be dealing with rather barren cranial terrain.  

At least I’ve still got my thick, sumptuous, decidedly visible eyebrows – and trendy or not, I want them to stay exactly where they are.

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A New Recruit

On Friday I went back in for a follow-up with Dr. Lungs.  Again, my friend Spawn of Doctors accompanied me and I’m sure – due to our old-married-couple behaviour at the best of times and the fact that she has accompanied me on all my visits to his office — he by now thinks we’re a particularly chic, yet closeted, lesbian couple.  I’m fine with that – I think it ups my hip factor and makes us all feel like we’re on an episode of The L Word – which in this case could stand for “Leanne” or even “Lungs.” Cooool.

This is not the point of this post, of course.  The point is Dr.Lungs was his usual fantastic self and balanced the facts + humane-ness of perfect bedside manner superlatively, once again. When I asked how bad this cough could get and what to expect, he said reassuring and confident things like “I am not convinced that the metastatic spots in your lungs are causing your cough.” This I took to be kind of a bold stance; “Eff you cancer, you’re not going to stare down this respirologist!” No, siree, this good man is not slacking off and leaving it to the chemo to take care of my cough — he is still looking at kicking its butt and preventing it from becoming yet another discomfort, another cancer reminder for me.

Which basically means I left with some weird nasal stuff to squirt up my nose, as Dr. Lungs thinks it might just stop the coughing. Or maybe not, but either way we’ve got another recruit for my army! Welcome aboard, Dr. Lungs, thanks for the nose squirty stuff and the determination.

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New Chemo, New Start

Yesterday was a long but totally bearable day at the hospital, thanks to my amazing oncology nurses, Marion and Roz (I’ve really missed them, even though we all agree we would love to not have to see each other at all, except perhaps socially!) And of course the time always passes more positively and peacefully when in good company, so I was happy to have my wündermummy there, and grateful for visits from familiar faces, especially a fellow mets-warrior, The Lovely Patricia. 

So then.  Here we are: I’ve started the new chemo combo and although I felt completely wiped out last night and my bones began to ache, this morning I felt better.  The regimen of anti-nausea pills and steroids will help me through these first few days, and the steroids will no doubt result in my having the appetite and energy of a teenage boy, and possibly the temperament of a pro-wrestler (wait, is there any difference?)  Just for a few days, then hopefully I’ll completely lose interest in arm-wrestling and pizza pops.  Then I go back in again next Wednesday for another hit of gemcitabine, followed by a week off before the cycle begins again all over again in January.

It feels like a new start, although not one that I would have wished for. I’m still up and down emotionally about it; usually okay, except when I have to really think or talk about it.  The tears at this point are about on par with the laughter, and actually I think that’s a totally acceptable place to be — at all times, really, not just when you have a cancer crisis.*

Anyway, enough already about me (uh, says the person who blogs about herself all the time?)  I wanted to add a quick update on George & Deborah Warkus’ battle to get coverage for the drugs Deborah needs to fight HER-2 mets. I blogged about them recently, and below is an article in today’s globe about their continued struggle:

http://www.theglobeandmail.com/life/fighting-cancer-in-a-bureaucratic-catch-22/article1404843/

*Having said that, the comments that you’ve posted and the e-mails from friends and family are helping me like crazy, so pleeeeease keep ’em coming!

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Chemo Overdose

Apparently my pain and torment is my own doing.  My chemo (capecitabine) is supposed to be taken daily for two weeks followed by a week off.  Guess who forgot to take a week off?  Yes, the genius with the stomach cramps over here.  So, instead of two weeks on chemo I went for nearly five.  This, according to the literature, is what is known as an overdose.  Pretty scary. 

No doubt I am proving someone’s argument about patients not being responsible enough to self-administer chemo.  I myself can hardly fathom my screw-up. I wonder how much damage I’ve done & how long it will take to undo.  This is my third day off chemo and the pain has barely abated.

You know that old Talking Heads song?  I keep hearing it, skipping over and over in my mind; the part where he says, “And you may ask yourself: My god, what have I done?”

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Under Siege

I have a high tolerance for pain.  Anyone who knows me well – family members, doctors, estheticians – will confirm this.  My husband and I agree: I am tough.  Not French Foreign Legion tough, but maybe Canadian Special Forces tough.

However, for the last 12 hours and, to a lesser extent, for 48 hours before that, I’ve been enduring wave after wave of intense abdominal pain. I emit weird primal noises and make fists and kick one foot around like a dog dreaming of chasing rabbits… And then the pain passes and, like a crazy person, I type some more.  

It’s the drugs – my hitherto mild-mannered capecitabine and lapatinib are now mercilessly kicking my butt.  Causing stomach cramps, intestinal cramps, nasty, painful, crampity-cramps and no small measure of the trotskys… If it were possible to be punched in the solar plexus and kneed in the nuts while in labour, that’s how I feel.

I have a hot water bottle pressed against my stomach at all times.  My husband makes them so hot they have to be wrapped in gigantic towels for the first couple of hours.  I may have poached my innards.  Don’t care – the relief is glorious.

My mom is now here, taking over where my husband left off when he went to work this morning.  She has fed me mashed bananas and electrolytes and soda crackers. She is busy in the kitchen now – I can hear her over my own weird primal noises; the comforting sound of her clattering around down there. 

Another wave is coming.  I really need to stop with the typing. Viva Imodium! Charge!

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K-O’d

Treatment yesterday.  Knocked out today.  Am in bed with tea… feeling flattened by the sad news that an ex-girlfriend of my husband’s died this morning.  She had lung cancer.  She was supposed to be getting married on Sunday.  Too tragic.  Maybe I’ll post again later when I have a bit more energy.

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Not So Funny Friday

There is nothing really funny about being doubled over on a toilet enduring severe abdominal cramps and the accompanying vile effuse while reciting every known English obscenity, quite a few French ones, and one choice bit of Serbo-Croatian that my Uncle Misa taught me when I was 16 and which I find particularly satisfying to (mis)pronounce in times of trial and outrage.  There is nothing funny about this scenario because there is nothing funny about mental illness, and in the grips of this latest post-treatment attack of the Screaming Trotskys I resembled nothing so much as one of those poor lost souls you see lurking in urban doorways, nattering and rocking away, uttering the occasional death threat while peering furtively out from their reeking person at the world around them with distrust and ill-will in their hearts.  We’re talking spitting image, except I had a toilet and clean hair.

I actually took my post-treatment low even lower while I cursed and clutched my belly in the semi-darkness of my (thankfully air-conditioned) bathroom: I imagined everyone I know engaged in something really fun and perfect, like splashing in a clear blue swimming pool, lounging on a dock at a cottage, or enjoying a cold beverage on a sunny patio.  This at least served to give me a series of mental targets for the more personal curses I was rattling off.

Now that I’m feeling all better (and have myself enjoyed the summer weather by splashing in a clear blue swimming pool) I’m feeling a little sheepish.  I offer my post-crisis apologies to everyone – really I didn’t mean what I called you and you do deserve to enjoy whatever little moments of glorious summer weather you can this year, regardless of what circle of hell I might be trapped in at the time. Carpe Diem – seize the sunny summer day.  Or in my case, Crappy Diem – seize the t-p.

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Trotsky & TMI

 

This clinical trial drug has knocked me right out.  Differently to chemo I find I’m hit with side effects pretty much the day after treatment, rather than four or five days later, but if last week is anything to go by I should be feeling better by the end of the weekend. Unfortunately, for now, its all fatigue, raw mouth, nausea, and what is often referred to in my family as “the Trotskys” – not because you keep tilting to the left but because of the manner in which you rather frequently make your way to the toilet.  Trit, trot, trit, trot…. You get the idea. 

 

(Dear god I cannot believe I’m divulging that on the World Wide Web. Several generations of my incredibly WASP forebears just rolled over in their graves at my lack of discretion.  Because you can get wireless internet access in your grave.  Fact.)  

 

Anyway, my dad is here from California for the weekend and has become chef de cuisine, nanny, personal shopper, and maid (in a word: me) which is helping enormously.  I am being pampered, a little of the stress is alleviated from my husband, and my daughter is out of her mind with delight that her Grandpa is here.  Tomorrow he has promised to make me potato & fish pie, exactly like the grandmother who just finished rolling over in her grave used to make.   

 

And that’s enough typing from bed with one hand and one open eye for tonight.  Tomorrow is a new day and one to which I shall no doubt awaken in horror when I recall the graphic personal content of this post.

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