Nothing Gold Can Stay

I should have known better than to title a blog post “Champagne and Sunshine.”  Clearly that was just asking for a smack-down, and oh, did I get one!

Before chemo yesterday I had gone to see the Palliative Care people at my hospital.  Do not panic – I am not throwing in any proverbial towels – I just went to see them to help me get my pain under control, since that’s kind of their area of specialty.  In fact, the first thing they tell you when you go in to see them is that they are not “end of life care,” but are rather specialists in symptom management and in particular, experts in pain management.  Sounds good to me (but I still think they’d better change their name or invest in a big PR campaign because no matter what you do, the words “Palliative Care” are still going to give 90% of the population the willies.)

Anyway, the point is that I came out of that meeting with a whole new drug program designed to manage my pain, one that would hopefully keep me functioning and pain-free after a few days of adjustment.  I was very excited – the idea of feeling mostly normal again was thrilling!

What happened instead was that last night was one of the longest and most painful of my life. My body didn’t respond well to the drugs, which never got the pain under control, and I ended up throwing up and writhing around in my bed for 12 hours.  

Good times. It was like the cancer saying, Take that, miss champagne-and-sunshine.  

Cancer is such a jerk.

Anyway, today is a new day.  Or I should say, this evening is a new evening, since I slept most of the day away. The PC people have rewritten my drug program and I will try something new tomorrow – not tonight – because I have decided that if I’m going to embark on another 12-hour narcotic adventure, I’m doing it in the daytime.  For now it’s just me and Big Daddy, plodding along as before.  Not the ideal marriage, but we’re comfortable with each other and know what to expect.  It may not be champagne and sunshine, but it sure beats all that barfing.

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Never a Dull Moment

These days my emotional state is so tied to my (very volatile) physical state, it can feel a little like a mood disorder.  I was doing fine yesterday, tons of energy, optimistic as can be, when at suppertime I coughed and – POP! – the rib pain came searing back into my body and knocked me on my kiester.

Ah, pain.  You exhausting and depressing thing.  As if the reality of my illness and the difficulty I have breathing weren’t terrifying enough.  As if I didn’t have enough going on with the coughing and headaches and auras and general weakness.  No, we need to round it out with a little excruciating pain.  Come on.

So I took one of the heavy painkillers I like to call Big Daddys last night so that I could sleep.  I’m afraid of the Big Daddys because I know they’re highly addictive, and frankly I don’t need to add Pill Junkie to my current list of problems.  And I also don’t want to be feeling so painless and groovy that I’m not able to connect to the people and world around me. So, until now, Big Daddy and I haven’t made each other’s acquaintance.

But the fact is I need sleep, and I need strength, and pain makes me frightened and depressed.  So I called in Big Daddy. At bedtime, I popped one.  And boy did it work!  Blissful floaty pain-free sleep… for exactly 4 hours, at which point a coughing fit overtook me and I ended up in tears, sitting at the edge of the bed wheezing and shaking in the dark, while my husband rubbed my back and I tried to calm down enough to take another Big Daddy.  And? Sweet sleep again… for a meagre 4 hours, when the coughing trauma was repeated, complete with tears and back-rub. And then, in the morning (this is the kicker) a hangover!! No, really, a bonafide fuzzy-headed hangover! Without the party! Like that’s fair. Obviously this whole pill-popping thing needs some fine-tuning.  And Big Daddy may have the strength, but his stamina needs work.

Meanwhile, Dr. Detroit called with what should be amazingly fabulous news:  it is possible that my spot in the study will open early and I could begin in a couple of weeks!  

But before we go popping the champagne (or the Big Daddys) there is a catch.  I felt renewed and improved following the vinorelbine last week, but 8 days later the symptoms have come crashing back – the coughing is worse, the pain has returned, the aura that shrank and shrank and shrank has begun to unshrink – and I am afraid that if I have to go 2 weeks without any treatment I will be back at the Brink. And nobody, least of all me, wants me going back to the Brink.

The idea of course is that the study would carry me far, far away from the Brink forever and happily ever after. But if I can’t make it to the study start day, there’s a flaw in the fairy tale.  Even if I make it, I could be deemed too weak and thus rejected.  I have no idea how bad things might get in two weeks, but if last night was scary, what shape will I be in 14 days from now? Or 21 days??

So, I want another vinorelbine treatment tomorrow.  Even if it means waiting 3 weeks rather than 2 to begin the study. I reason that I went about 7 weeks without treatment and it did a lot of damage, so I need at least a couple of weeks of consecutive treatment to restore some strength before I do another chemo-fast in preparation for the clinical trial. But I actually have no idea if this is medically sound reasoning, so I’ve put it to Dr. Detroit via e-mail, and await her reply.

And, finally, as if that’s not enough drama for one post: my oncologist’s secretary called in some kind of massive favour and managed to get my brain MRI scheduled for tomorrow afternoon.  

Well, at least it’s never dull around here.

Hardest Day

First the good news: Although all CT scan results are not yet in, so far there is no evidence of metastasis in the bones.  It could very well be that the rib I cracked this morning (with one big hearty cough-sneeze combo at breakfast) is just a “cough fracture.” But it hurts like hell, so you’ll forgive me if I’m a little stoned on pain medication as I write this.

And now the bad news…in fact the worst news we have received since my diagnosis almost 2 years ago:

The nodules in the lungs have grown and while some lymph nodes have shrunk, some have enlarged and there are new ones in the space between my lungs.  All of this means that it is official: my cancer does not respond to standard chemotherapies. Actually they’ve tried all but one, and they’re holding that in reserve for now. Better I try some experimental treatments, they say.  Better we find a clinical trial, they say, though they don’t have one in particular in mind right now.

I am simply devastated.  I feel desperate and frightened and angry. Nothing has been able to stop this cancer, and I fear that nothing will. I feel mystified – utterly and completely – by the idea that something so ferocious has made me its target. I am simultaneously on the kitchen floor, under the duvet and wandering around disoriented and underdressed in the blizzard.

There have been a lot of tears today – a lot. My husband and I have instinctively been no further than a few feet apart at any time since receiving the news, as if we are afraid that this cancer well and truly means to separate us. The invisible tentacles of my parents, my family, and my friends have reached out through phone calls, texts, e-mails and general vibes of love, weaving a kind of blanket of collective protection around me. And my daughter?  Oh, my baby.  That’s the hardest of all.  I can’t even look at her without thinking, I just want to see you grow.

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?”

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!

Going Boldly Back to Waxing

Today I learned one of those little things nobody tells you about life after chemo…

 

You know all that money and time and pain-management you have invested over the years in a little beauty ritual known as waxing your legs?  You know how after many years of such investment, the hair started thinning a bit, growing back a little more sparsely, the roots weakened and eventually (say after about 12 years) these little torture sessions became more tolerable?  Well our friend chemo resets the clock on all this.  When your hair grows back – right after you have celebrated the fact that you actually have hair to wax again after months without – you will find that those little roots are as deep and tough and determined as praire grass. Just like they were way back in the beginning of your first foray in to the world of waxing.

 

In a word: YEOUCH!

 

Still, I’m not complaining.  Well I am, obviously, but I’m grateful to have hair at all and what’s the pain of a leg wax compared to the myriad evil side-effects of chemo?

 

To those of you who are hairless: go baldly and bravely onward, knowing you will one day have hair again. 

 

To those who have hair again: go boldly and bravely back to your esthetician knowing you’ve been warned.