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Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

It used to come mostly at night, but lately it’s had the audacity to creep in even in bright sunshine. I’ll be going about my business when I get a sudden flutter in my belly, a lump in my throat. Silent flashes of anxiety. Brief, lightning-clear moments of reckoning: My god, is this really happening to me? Something shifts. Everything around me takes on a slightly unreal aspect, becomes slightly less solid. Fear is on the threshold. Don’t think it, don’t let it in. Everything I see is coloured by it; it settles over every surface like a layer of poisonous dust. Everything I do and say, every move I make stirs it up, unsettles it, thickens the atmosphere with it so I can’t ignore it anymore.

Am I going to die?

Sometimes, by the time I am in bed at night, and the house is quiet, I can barely breathe. Please please make it stop take the cancer away that’s enough now please just let me have my body back my life back let me live…  I try to distract myself, push it down, meditate away from it. Then I let it come, cry, try not to go crazy. My husband holds me in his arms and kisses my hair and wipes my tears away with a corner of the duvet as the Ativan melts under my tongue. Slowly my breathing steadies.  My heart stops pounding so fast. I’m exhausted now and my body will sleep, its only true refuge from the fear.

But it will be back, again and again. No matter how good my good days.  No matter how angry my anger.  The fear keeps coming back.  Am I going to die?

How can it not come back?  How can anyone around me, or anyone who reads this blog, pretend they haven’t gone there in their heads, asked the same question? Let’s admit it. Let’s not pretend that we don’t occasionally get stopped in our raging, planning, hoping, fighting tracks by the thought that this cancer might just kill me, and much sooner than we’d ever imagined.

The thing is, it can feel like even admitting to the fear – admitting that I wonder if this is going to kill me (meaning kill me soon) – is somehow giving up. But I’m not giving up.  I’m not. I won’t, I promise.  I feel like I have to be very clear about that because the theory goes that if you get it in your head that this thing is going to beat you then it does and you die.

I’m not entirely convinced of the truth of that theory – and I certainly don’t think it’s fair to deny someone the right to confront their own fears of death on the basis that thinking about it makes it come true – but in case the people who love me believe it, I’m telling you all now: I’m not quitting.  There’s a difference between letting myself consider the possibility that I might die and calling it quits.

What I want is to face the fear and then send it back down into the reeking depths from which it comes.  But facing it is such a tall order!  When I admit to myself that yes, this cancer could kill me, the first thing I think of is how hard that would be on my husband, my mom, dad, brother, family, friends, and yes (insert knife into heart here) my little girl. Causing every single person I love pain and loss and sadness is just about the worst fate I can imagine. It makes me feel helplessness and sorrow on a level that is almost physically painful.

That’s the number one reason thinking about my own death sucks – because of how I imagine it would hurt the people I love.

I actually don’t think I’m afraid of death itself. Pain and suffering, yes (definitely, unequivocally.)  But death?  Everyone is going to die.  We know this.  We just can’t wrap our heads around it. It’s hard to be afraid of something you can’t wrap your head around. It’s just too big a concept, just too miraculous and natural and kind of peaceful to actually be scary in and of itself.

What is scary and awful is the idea of the departure gate: saying goodbye to everyone and everything I love.  And it’s less scary than it is just plain awful.  Especially if it’s preceded by suffering and making everyone around you watch helplessly, knowing that they’ll just endure a whole new kind of suffering when you eventually do die… Ugh. Now that’s torment.

So why think about it?  And why, for the love of god, torture everyone by writing about it?

Because it is unfortunately part of my reality now, and if I don’t think about it or talk and write about it, it will drive me crazy.  Like wandering around grocery stores in bare feet and pajamas crazy.  Like putting vegetable soup in the washing machine crazy.  Crazy crazy. Certifiable.

Trying to avoid thinking about it or talking about it just makes it worse.  It makes me feel more isolated, which in turn makes me feel more afraid.

So I’m for tackling this topic head-on and not side-stepping any harsh realities of my so-far untreatable extremely aggressive life-threatening jerkface cancer.  Which means that lately I’ve been saying out loud to the people closest to me “I’m afraid I’m going to die.”

These are not easy conversations to have, not only because it’s really frigging difficult to talk when we’re crying and blowing our noses so much, but also because there’s not a lot to say about it.  Of course we have all thought about it.  We don’t like to think about it, and we want to believe that I will recover and live a long, healthy life – which I plan to do – but the thought that I might die has crossed our minds, all of us.

I’m just asking that we let the fear come, look it in its beady little eyes as best we can, and allow ourselves to cry about it, acknowledge it, be angry about it – whatever – just as long as we don’t try to ignore it.

Somehow I believe I can make the idea of dying just a little less terrorizing if I let myself get familiar with it.  If I can do this I believe that fear won’t colour everything, that it won’t always be lurking and looming, and I might be able to slip out of its grip and move away from it, toward other thoughts. I might actually get to enjoy my life fully, and be completely engrossed in all the things about it that make me want to live it for a long, long time.

At the very least, when I’m with the people I love, fear shouldn’t be allowed to pull up a chair and sit at the table with us, scratching its belly and belching in our faces as we all try furiously to ignore it.  If it shows up we can say, “We see you.  You’re ugly and you stink.  Now get out of here.”

If we’re going to sometimes be afraid, at least we can be afraid together. I want for it to be okay to talk about death as just one of the possibilities because it is one of the possibilities and if I don’t face it, it’s going to make me crazy. It is.  But we can also spend a lot of time talking about the other possibilities too, like beating this thing, finding the unconventional treatment that actually works for unconventional me, and imagining together those happy days in the future when I bore everyone who comes within hearing range with the story that ends with the line “…and then the doctors said, We don’t know exactly what happened, but the cancer is just GONE.”

Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

As I mentioned in my last post, it appears that once you drop out of the realm of standard cancer treatments, the system isn’t designed to support you quite in the same way. I don’t think anyone knows exactly what to do with me.  And it’s extremely unnerving.

This predicament is many-layered and messy, and it has occupied my time and energy for the last several days, but I’m not going to go into a lot of detail for two reasons:

1) I tried to write this post detailing exactly what happened (or didn’t) and it ended up being about 5 million words long, and

2) I don’t understand exactly what happened (or didn’t) and I don’t want to write anything unfair or untrue. 

Suffice to say that as the fog of our initial shock lifted, we surveyed my situation and found that it was a total crash site. We needed a plan — knowing what the next steps would be and who was leading us through them was the key to getting my fear, despair and uncertainty under control. But we didn’t have a plan.  We had a piece of paper with a web address (clinicaltrials.gov) and some search parameters written on it, but no real understanding of what comes next.

Admittedly, we were in shock when we heard the news that my cancer does not respond to standard treatments so it’s possible we were given information that just didn’t register, but we left the clinic without really knowing what to do and the result has been confusion, insecurity and a (possibly misplaced) sense of abandonment. And of course, a little rage.

However, we’ve since made some progress identifying clinical trials and other options, mostly by communicating with my oncologist and enlisting the help of friends, my hospital’s excellent social worker and my very caring and capable family doctor.  I’m blessed with incredibly supportive people in my life who are good at networking and handy with the Internet.  They’ve been researching, calling doctors and other people who might be able to help, and generally just sleuthing around to try to find promising programs and clinical trials that I might be eligible for.

I can’t emphasize enough the importance of having people to advocate on your behalf when your head is spinning and you’re lurching unsteadily between terror, rage and optimism like an emotional bride of Frankenstein on newly cobbled-together legs.

Meanwhile I’ve made some changes where I can – every little thing counts and I decided that if there was going to be a pause in my treatment I may as well use it to detox from all the chemo and try to rebuild my immune system.  Actually, my mother decided that and I agreed since it’s widely acknowledged that there’s no point in disagreeing with my mother when she has decided something.  So I now take about three handfuls of vitamins and supplements a day and have finally and begrudgingly cut back on meat (fois gras is technically poultry,) alcohol (champagne is technically bottled happiness,) and sugar (I cannot be expected to give up chocolate entirely.)

Plus my friend Todd is a nutrition-fascist with a juicer and a lot of experience with cancer diets, so I spend my days knocking back his crazy cayenne- and tumeric-spiced leafy green/dark berry cancer-killing concoctions.  They’re actually not as bad as they sound, and no, I have not spiked them with vodka. Yet.

In short, things are moving more or less in the direction of action, though I wouldn’t say I have an actual plan since we haven’t yet identified the clinical trial for which I’m going to apply.

I do have my eye on one promising experimental drug in particular, but there are no trials for it in Toronto, and while we’ve always said that we would find a way to go wherever the right treatment is, right at this minute I have no idea how we would manage to do that, logistically or financially. But I’m trying to just think about things one step at a time, and today’s step is to see what there might be for me in Toronto.  This afternoon we’re meeting with the head of clinical trials at my affiliate hospital to see if we can match one of their current studies to my case. I’m somewhat optimistic – after all it is one of the top five cancer centres in the world – but my approach is to find the clinical trial that has the best chance of pushing this cancer back from whence it came, not to try to find the closest match of the most conveniently located trials available.

So once we have an idea of the most promising studies, wherever they may be, we need an informed review of them all and a fairly quick decision.  Ideally I want to know what treatment I’m starting (and when and where) by the end of this week.  That might sound like a tight turn-around but I’ve got a mean mother of a metastasis taking up a little more real estate in my body every single day and I need to do something about it before the whole neighbourhood goes ghetto. My rib continues to hurt, my cough is much worse, and my breathing is hampered by the pressure of the lymph nodes on my bronchial passageway. This cancer has become symptomatic – I can feel its progress – and quite apart from what that’s doing to me psychologically, it’s wearing me out physically.

I know I need rest and peace, but I won’t be getting either until I have a plan.

Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

If the seven stages of grieving are anything like the seven stages of getting spectacularly grim news about your cancer, then I’m right on schedule:  I am no longer drowning in despair or frozen in shock, but am awash in the turbulent waters of anger.

This is good because it turns out that the upward climb from the bottom of the abyss is steeper and slipperier than at first it looked, and I was starting to slide back down a bit into the darkness of fear and despair.

But then yesterday I got mad.  Figuring out what my next step in fighting this cancer is supposed to be has been incredibly difficult and intimidating and I was feeling frustrated, frightened and unshepherded as I tried to navigate the clinical trial quagmire. And then, just when I was on the verge of crumpling into a heap of hopelessness, my fear and frustration transmogrified into a clear, burning rage.  It was like a blinding spotlight aimed squarely at a system that seems ill-equipped to support a person facing this more-desperate-than-average cancer flummox, and at a disease that targets mothers, fathers, best friends, and daughters instead of just taking out monsters like child molesters and corrupt politicians.

To my surprise I found myself smashing my fist down on the kitchen counter.  I did this about five times.  Then I did it about ten more times.  It may have looked a little silly but it sure felt better than collapsing into tears and being overcome with fear and frustration.  

I suddenly understood why men kick things when they’re mad, especially things they have just stubbed their toes on. The fist-pounding made me feel less vulnerable, somehow stronger.  Also a tiny bit cro-magnon. And then it started to hurt, so I considered kicking in some drywall, mentally appraising all the walls in our house for smashibility, and wondering if we had an axe…

Next, I had several very clear premonitions of spending the afternoon with blood-soaked towels tied around my limbs while waiting to get stitched up in emerg. Maybe the axe is not such a good option for me.

That’s when I remembered the “Rage Box” that my friend Karen made me.  It is a cardboard box in the garage filled with old chipped cups wrapped in newspaper.  The instructions read as follows:

1) Place in an area where things that break can be thrown. Preferably somewhere that you won’t have to clean up because who the hell wants to do that?

2) Start to feel the rage… run to box, grab a mug, throw against the floor, SCREAM!

3) Repeat as often as necessary.

4) Call when you need a refill.

I smashed everything in the box out in our back laneway (but did not scream so as to avoid neighbours calling police.)  I smashed some of them twice if they still looked smashable after the first smash. And my god it felt good.  I have already requested a refill for the rage box.

Look out cancer, I’ve just discovered rage, and I like it.

Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

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.

Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

There is a big storm here today – a blizzard.  The snow keeps coming down and piling up, traffic slides and crawls, and on the sidewalks people bend forward and stumble into the horizontal blast of a Canadian winter reminding everyone who’s boss.

I’m feeling a little like the cancer is showing me who’s boss today.  Not physically, but by virtue of it kicking the ass of my optimism.  The fear that the cancer might have spread to my bones or further colonized my lungs is coming down and piling up.  I’m trying to navigate it but I keep sliding and stumbling. I dread the CT scan tomorrow because I dread the results.

I’ve had a stormy day – torrents of tears, bolts of anger, clouds of despair.  A darkness of helplessness and a heaviness of frustration and a hail-storm of anxieties. You name it, it came crashing down. Luckily I had a session with my cancer shrink scheduled for today, but the best I could do was plow through a box of Kleenex asking, “Why can’t anyone stop it? Why can’t anyone fix it?” The pathetic futility of my questions only set me further adrift, and he had his work cut out for him just to bring me back to a basic acceptance of the anger and fear.

Of course, I know that the CT scan could possibly tell me that the cancer has stabilized, or even started to shrink.  After all, my neck lumps have disappeared.  (Is that a glimmer of sunlight I see?)

But like a Pavlovian dog, I’ve been conditioned to expect bad news each and every time they scan my body. Last time, even though my lymph nodes had stabilized, my lungs showed evidence of progression. (Nope, just more storm clouds.)

The coughing and the pain in my ribs make me even more fearful; maybe these are symptoms that the cancer has further spread.  Like walking out into a blizzard with nothing but a light jacket and city boots, my trusty tools Denial and Distraction aren’t offering me much protection in these conditions.

There are many hours in the day when I am functioning and managing as though everything is okay – or going to be.  But underneath is always a growing sense of foreboding. And also no small amount of anger that I have to feel this way – this afraid – again.

Yes, I know what this is: classic fear of the unknown. Thank-you Dr. Freud. But let’s not go so far as to say it’s “just” fear.  I am aware it’s not bad news yet and it may never be bad news, but that’s only my reason trying to wrestle with my emotion. Sometimes emotion wins.  This is one of those times.

I’m writing this while I’m still in the darkness.  I could have waited until I was in a brighter place, feeling less fragile, but what would be the point of that?

In a way, the act of sharing this fear does shrink it, if only a little. If I think about how many people might be out there reading this – how many different portions my fear might be divided into – it somehow feels a little better, a bit more manageable.

When I read the comments it’s like they take little chips out of the icy wall of fear, like they help take the cancer down a notch. Like I get a little bit bigger, just a little less vulnerable.

I don’t know what the name is for that unscientific phenomenon, I only know it’s true.  It’s a small shelter from the storm, but it’s a shelter nonetheless.

Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

My blood counts were once again too low for treatment today.  This is a little disconcerting, a little frustrating – but I understand that it’s not the end of the world.  This chemo is serious stuff and my body needs to recuperate a bit.

What was more than a little disconcerting was all the conjecture today about my back pain. When I told the nurses about it they said that maybe I’d cracked a rib, but reassured me that it didn’t mean anything, that this can happen to people who cough a lot.  However, I needed to be seen by a doctor and since my oncologist wasn’t there, I met with a resident.  I explained the whole pain-when-I-cough scenario and he, like the nurses, said it was likely a fractured rib.

Here’s where it gets troublesome:  I asked if fracturing a rib was fairly normal with a serious cough or whether it means that the cancer has likely spread to my bones.  He didn’t even pause before saying “Yes, it’s likely that it has spread and I would expect your bone density is low.”

Okay, here’s a tip for all you up-and-coming oncologists out there:  your words are powerful – wield them with caution. You are not a mechanic, the patient is not the driver of a malfunctioning vehicle.

You’re a doctor and this is my body, my life we’re talking about. If you are going to tell someone with metastasized disease that it may have further spread – in other words that the treatment isn’t working and things are getting worse – consider that this information might have emotional consequences.  

Consider that it might freak the patient out a bit.  Don’t just throw it out there like you’re talking about a carburetor or a transmission that blew, because it’s not a car, it’s a human being and there are emotions attached to that carburetor; there are questions of mortality attached to that transmission.

Seriously. I was shocked. I immediately began processing the implications of yet another treatment not being able to stop this cancer. Tears started to pool in my eyes and I had to focus on breathing so that I wouldn’t suffocate from the g-force of fear pressing down on me.  The doctor began looking extremely confused and stressed out about my tears.  At the same time, my mother seemed to rise from her chair and materialize protectively at my side in far less time than it is humanly possible to cross a room.  Also, she had somehow procured a box of Kleenex enroute.

But then the voice of reason kicked in.  It said: Check out the look of horror on his face. Does this guy even know what he just said? So I dug deeper.

I asked what else could be causing the pain, whether it was possible that I haven’t cracked a rib at all, that I just pulled something?  He said it was just as likely.

Just. As. Likely.

A bruised rib or pulled muscle is not an indication of disease progression. I had to resist simultaneous urges to hug him and smack him in the head. I even managed not to shout What’s wrong with you? Why didn’t you say so in the first place?

The pools in my eyes began to evaporate and the weight of the air was suddenly more bearable.  In other words, fear left the room.  It didn’t leave the building – in fact it has maintained a respectful following distance all day – but at least it’s not sitting on my lap anymore.

Dr. Still a Little Inexperienced (Let’s call him Dr. SiLI for short) and I decided that an x-ray today would reveal either a fracture or potentially indicate other possible causes of the pain.  He would call me with the results.  Of course the CT scan on Tuesday will tell us much more, but I pointed out that waiting approximately ten days from now for those results would not be psychologically ideal for me.

Then Dr. SiLI examined me.  (Not a bad idea, since after all he’s a doctor and I’m a patient with a complaint of physical pain.)  He listened and tapped and prodded and poked around looking for the supposedly cracked rib, asking, “Is it here?  Here?” while I replied, “Um, I don’t know… maybe up a little…” and ultimately resorted to coughing in order to locate the pain.  Then, when he pressed it, I didn’t yelp or jolt my body away — in fact it felt kind of good, like a massage.  This I take to be a good sign, because the only time I ever officially fractured a bone you couldn’t even look at it too closely without causing me pain.

So Dr. SiLI gave me a ‘script for the pain & sent me for an x-ray, and then my mom and I left the hospital and did what any normal people would do after such a roller-coaster of a morning: we went to the movies.

And here I am a few hours later, eating vanilla ice-cream right from the tub as I transcribe the drama of the day from the safe distance of a few hours spent with George Clooney. And you know what?  I’m actually thinking how far I have come in this role of Person With Cancer.  It wasn’t so long ago that I would have staggered out of the doctor’s office in a state of shock and trauma, without the experience or presence of mind to stop the panic, dig deeper, and question further.  The doctor’s first comment would have immediately convinced me that the disease has spread to my bones – and who knows, maybe it has. But it’s just as likely that it hasn’t. Just as likely.

Those three words don’t get me any closer to knowing the facts, but they are enough for now.  And I know fear is still camped outside my front door, but I’m not sharing my ice-cream.

Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

 

FEBRUARY 16, 2010 · 12:56 PM

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.

February 2 2010, 5:01 PM

Something strange is happening to me.  Me, the communicator, the social creature, the compiler and checker-offer of to-do lists… I suddenly have a back-log of unreplied-to e-mails in my in-box and have become one of those people who only checks her voicemail once or twice a week.  I cancel, reschedule, or otherwise bail out on social plans almost as quickly as I used to make them.  My to-do lists — usually a source of great satisfaction — are sources of torment, the growing number of glaringly un-checked, undone items reminding me of my lack of productivity.  I look at the calendar full of social commitments for the month, and I shudder at the thought of keeping them all.

In short, I’m overwhelmed.

This can partly be blamed on the weather.  February in Canada is no joke: it’s cold, it’s dark, and it sucks. Its only redeeming quality is that it’s usually just 28 days long.  Every year the cold weather encroaches like an enormous, sweating, mouth-breathing seat mate on a trans-Atlantic flight:  you are stuck with it, and even though it makes a relatively short time feel unendurable and shrinks your universe to a claustrophobic little space – it has to be tolerated until it eventually gets up and lumbers off into the sunset.

It’s only February 2nd so it will be a long time before I get to see the lumbering backside of this month.  And my anxiety about e-mails piling up and voicemails cramming my phones is already spiking.  I want to erase a good 50% of the scribbles on my calendar, I want to cross off a whole bunch of to-dos and just let them be not-dones.

So you know what?  That’s exactly what I’m going to do. I’m going to hibernate. I’m going to just hunker down, stop feeling guilty about not replying to messages, stockpile the comfort food and wait out this miserable month. 

Then I can re-emerge feeling fully recharged, perhaps a little plumper, and ready to actually enjoy all the stuff that keeps me busy. The stuff that usually makes me feel happy, not anxious; the stuff that used to feed my energy, not drain it.

I won’t cut myself off from the world completely (please, let’s be realistic — I’ve got dinner plans tonight!) but I’ll opt to be more socially spontaneous and less constantly committed.  I think the rest will do me good.  

So, if you’re trying to reach me and I don’t get back to you right away, don’t take it personally – it’s not you.  It’s February.

DECEMBER 18 2009, 5:59 PM

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!

DECEMBER 16 2009, 1:07 PM

Apologies about that mysterious reference to “developments in development” – I was waiting to speak to my doctor, and now that I know what is going on and have shared it with family, I can finally blog about it.  Basically, the nodules in my lungs have turned out to be metastasized breast cancer.

This means that somehow, in spite of the lymph nodes shrinking and stabilizing, the spots in my lungs managed to multiply and grow larger.  Those very same spots I saw on the CT scan in the solar system of my lungs – those tiny little flecks indistinguishable from all the other tiny little “normal” flecks – are in fact gigantically evil.

We were devastated and enraged when we heard the news, especially after having felt so buoyed by the stabilization and shrinkage of my lymph nodes.  I did a lot of crying, and a lot of raging this past weekend; a lot of fantasizing about smashing things (windows, pieces of furniture, cancer cells…) and a lot of asking the universe if it couldn’t have just cut me a little slack for once?  Really, how much hope-bashing is allowed?  How many bounce-backs do I have to make?

But, after having to gone to some very dark and scary places, I was surprised to find that I could come back from them again.  I resurfaced.  Once again, the will to live my life and beat this thing has prevailed over the fear that it will beat me and take my life. Or prevailed for now; it’s a bumpy ride, I’m bound to fall off the hope wagon from time to time.

What helped enormously was having a long talk with my oncologist yesterday.  Apparently it is unusual that some areas would respond to treatment while others do not (of course I have to be special.)  However, it is not at all unusual that the cancer would affect multiple organs.  It is also not unusual for people live years and years and years just firing at the moving target of metastasis.  Years and years and years.  So, looks like I should continue to look both ways when I cross the street and keep wearing my bike helmet.

My oncologist’s recommendation is that we change course of treatment immediately to something that might be more effective in hitting ALL areas of activity, because she is especially concerned that I don’t become too symptomatic in the lungs, since it’s not fun to be gasping for breath and this cough is already super-annoying.

So my new treatment is a combination of drugs called gemcitabine and cisplatin, administered through IV in the chemo clinic, starting tomorrow. Off the pills and back into the veins! Actually, I’m kind of ready to abandon my current side effects and try out some new ones.  I’ve been told to expect nausea and tingling hands, but with any luck my bad dream about losing my hair won’t come true — my oncologist says there could be “some mild hair thinning or loss.” Sounds a bit patchy to me, but we’ll see.

In the mean time, onward.

On Friday my friend Chris wrote me an e-mail and in it he said “The universe loves you.”  I really need to believe he’s right.  I just wish it wasn’t such tough love.