Tag Archives: support

Return From the Brink

Now that it’s been several days of no longer feeling like I’m actually knock-knock-knocking on heaven’s door, I think it’s time to admit that for a while last week the general consensus around here was that I was a goner. That I was on my way out, making my grand exit, rolling the credits.  That I was dying.

I’m wary of tempting fate by talking about it in the past tense, since we’re by no means in the clear, and I am still spending the better part of my days in bed.  But the difference between how I was last week and how I am now is enormous.  I just feel that how close I actually came to the Big Finish needs to be acknowledged because all of us – me, my mother, my husband, my brother and the friends who had rallied around and tried to hold me to this side of the mystic curtain – are just shaking our heads in wonder at my apparent Return From the Brink.

It is hard to say this without it sounding like an exaggeration, but just a week ago I was literally thinking that I had maybe a few weeks at best, and probably not many of them lucid, given the pain and the difficulty I was having breathing. This fear was of course confirmed by the solemn words of various medical professionals, including my dear cancer shrink.  I remember panicking that it wasn’t enough time; that it had come upon me too soon.  I couldn’t look at Georgia without wanting to hold her little body close enough to mine to feel her breathing (which she is able to tolerate for about four seconds.)  My husband and I said “I love you” as we always do, but the words got bigger and heavier, sweeter and sadder.  My mom would put her hands on my forehead to ease my headache and I could feel her trying to pull the cancer right out of my body, trying to draw it away from me and make it stop killing me.  So, even as I got ready to go to Detroit, I wasn’t convinced there was a point.

There were other, less emotional responses too.  I remember wondering if this blog might get published as a book posthumously, and thinking how unfair it would be to not get to be around when it happens.  (Who will get to sit on Oprah’s couch?? Will all of you give your permission to publish your comments along with my posts??)

I also began mentally composing my own eulogy, or a kind of farewell speech for my funeral. I know that’s macabre and a little egomaniacal, but being a writer and  a control freak I’ve been drafting some version of it since I was a teenager.  Besides, I reason it’s a lot easier to make jokes about a dead person when you’re the dead person.

I also became philosophical, wondering if I were granted a reprieve, or a second chance at life, how long it would take for me to start complaining about things like wrinkles or gaining weight.  Whether I would eventually start taking for granted in little ways the people I love and who love me.  I wondered whether I would really be able to sustain wanting and appreciating every single day that was given back to me; if I would be capable of holding on to the concept that each day was a thing once taken and then returned to me, to be treasured, to be grateful for.  To want life that much, continuously – is it even possible to function when you have that profound an awareness of your mortality?

(I swore that I would try.  I’d love to face the wonderful problem of not functioning properly in society due to an excess of awareness and gratitude for being alive.)

Anyway, it is a strange and terrifying thing to get so close to death, and stranger still to be reflecting on it when I don’t actually feel like I’m a comfortable distance from it.  Around here we’ve all begun to tentatively and somewhat incredulously talk about it, like survivors of a car crash or a house fire, still in shock, mere meters from the burning shell of a once-recognizable thing, but starting to believe that we’re safe from immediate danger now.  We’ve started to admit to each other that it really looked like I was going to die, that it could have been days or weeks, that we were all so scared – and that just as suddenly it doesn’t look so much like that anymore. It’s as though on a cellular level, or maybe somewhere near the seat of the soul, we’re all still reverberating from the enormity of it.

And yet we’re also calmer than before.  This comes partly from our new-found hope about the future (because now we believe that there could be a future for me!) and partly from walking so close to the edge, but not going over.  Having approached it, sidled up to it, we’re perhaps more at peace with the possibility of my death, but also hanging on even tighter to my life, and to each other.

Anyway, for now, even in the shadow of the Brink, it feels immeasurably good to be able to be out of bed for a few hours a day, to enjoy the sunshine and fresh air, sit at the kitchen counter, boss people around my kitchen, laugh and eat and talk.  And so far I’m not complaining about wrinkles or starting to take anyone for granted, though I did notice with some alarm that I’m in desperate need of an eyebrow wax.

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Am I Going To Die?

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.”

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With A Little Help From My Friends

As I get back into the groove (such as it is) of the chemo/side-effects/recovery cycle, some amazing friends of mine have set up a kind of online volunteer community for me on this website. It’s a user-friendly place where people can sign up to help out with things like lifts to and from hospital, or making meals for the freezer. The site is really well thought-out; for example when you put something like a hospital pick-up date on the calendar, notes immediately pop up, including time, location, link to a map and other details. 

And it was fairly easy to set up – or so says the superstar friend who coordinates it from her home in a small town North of the city.  (It’s one of the many ways she has found to not let geography get in her way of getting in my cancer’s face.)  She sent out an e-mail to a list of friends and family inviting them to join, et voila — a little army of volunteers was assembled, and they make my life easier and my cancer more manageable, one little favour at a time.

It’s been so helpful, not to mention pretty humbling and moving to see people checking in and signing up to help.  When you lose so much control over your life – when it sometimes feels like you’re losing the shape of life as you knew it completely – it can be really hard to ask for and accept help, because that can feel like an acknowledgement of the loss of control. But as far as I can tell, learning to accept help takes more courage than pretending you don’t need it. Needing help and not asking for it is the path to curmudgeonhood. Whereas when you accept help, it’s the equivalent of thanking someone for their friendship.  At least that’s how I see it, and it’s my blog so I get to say it like it’s the law.

This website is one way to make it both easier to ask and more practical to volunteer for help in a time of need. Check it out: http://www.lotsahelpinghands.com

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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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I Get By With A Little Help From My Friends

My fridge runneth over.  This is what being blessed looks like.  And you haven’t even seen my freezer!

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Friday Night in Emerg

At about 5pm on Friday, my clinical trial nurse called to say that I needed to go to emergency to get my heart checked out immediately. Apparently a MUGA heart scan and 10,000 ECGs are not enough “checking out” for one week.  I’m not complaining – as I’ve said before, if they want to scrutinize every blip and squiggle on my test results, I am happy for them to do so.  Grateful, even.

 

It turns out my medical oncologist had reviewed all my ECGs, but since this new study drug can be hard on the heart (and given all the chemo, radiation and Herceptin I’ve had) she wanted me to be seen by a cardiologist before the weekend just to be sure there was no damage to my heart. 

 

I was told not to be alarmed, that this was just a precaution and they didn’t think anything was wrong – but these kinds of assurances are always a little suspect when you are at the same time being urged to proceed immediately to the emergency department where the triage nurse and ER doctor have been notified and are expecting you.

 

I thought about riding my bike but then reconsidered, given that the storm clouds were about to burst again, and because this was, you know, a possible cardiac situation.  My husband was still in a conference call and then had to pick up our daughter, so I called my friend Angelique. Not just because both her parents are doctors and she knows her way around a hospital, but because she is fantastic company in any situation, and I knew her tennis game had been rained out.

 

Anyway, it turned out that they processed me remarkably quickly, and “they” were without exception kind and friendly and professional.  Plus the doctor who was responsible for me was young, personable, funny and, ummm, extremely attractive with a gentle, deep voice like Forest Whitaker’s.  I blame that combo of qualities for any little flutters on the ECG.  It was like being on a hidden-camera show, and Angelique kept making fun of me when we were alone in the room: “Oooh, Dr. Hot Doctor, listen to my heart!!”  We were having far too much fun for a Friday night in Emerg.

 

After many tests and Q&A’s and a visit from a senior cardiologist who told me that the test of the liver enzyme that would indicate heart damage had come back negative – hooray! – we were free to go.  Dr. Hot Doctor ran through a litany of possible symptoms that would indicate a need for me to run back immediately into his waiting arms (or maybe he just said to the emergency room) and then the nurse unhooked my IV and ECG leads, literally emancipating me at last.  We thanked everyone for their excellent care and efficiency & Angelique was on the phone ordering sushi before I’d even changed out of my hospital gown.

 

Georgia was in bed by the time we got home but my husband was anxiously waiting, so we unpacked our take-out and ate dinner in my kitchen while telling him all about our Friday night at Emerg, including several embellishments about the charms of Dr. Hot Doctor.

 

Then, exhausted and happy to be home with my Mr. Hot Husband, my dear friend, and my at least passably healthy heart, we hit the couch to watch a movie and I fell asleep before the end.

 

Turned out to be a great night after all.

 

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Carol’s Letters – Letter 1

The following is a letter written by a woman I know, updating her family and friends about what she’s going through with breast cancer.  Carol’s letters are written with a blend honesty, courage and humour as she navigates the sometimes bewildering and always surreal landscape of cancer treatment. I thought they should be shared.  She agreed to let me post them.  Here is one of the first, originally written in January 2009:

January 21, 2009

Subject: Update

 

Hi everyone,
It’s hard to know exactly where to start…One of the many things that I am learning is that each of my caregivers looks at my breast cancer in a slightly different way. The surgeon was primarily focused on locating and removing the tumor, infected lymph nodes and sufficient surrounding tissue to ensure that my margins were clear. His post-op report to me was that all of the nodes in my arm pit were removed and 5 of 15 nodes were infected, the 4.5 cm tumor and surrounding infected tissue were removed and the margins were clear. In addition to this, there was no metastases to other organs. All of this brought me to the diagnosis of stage 3A cancer.

The oncologist also has staged me as a 3A but they look at it a bit differently. What is the composition of the tumor/cancer, how aggressive was it and where could microscopic cells have spread to and what do I have to do to find those marauding cells and kill them so that we never have to deal with a recurrence?

We (Linda and I) met with the oncologist today at Princess Margaret (PMH). His interpretation was as follows:

-the tumor was large (4.5 cm)
-5/15 lymph nodes were infected (the cancer has learned to move)
-the tumor was very aggressive: Grade 3 (as he referred to the stages 1 thru 3: the good, the bad and the ugly…I had the ugly)

The “Grade 3” is important to him because it indicates the aggressiveness of the tumor, its ability to travel and, therefore, how aggressive he needs to be with treatment. Having said that, the cancer cells are Her2 positive and estrogen/hormone receptive, which is good news for treatment as they have drugs that can specifically target and bond to the receptors and prevent cancer growth.

What does this mean for my treatment? At PMH it would mean a standard protocol of 3 courses of FEC (the Google junkies may know what that means, this is a combination of 3 different chemo agents), followed by another three courses with Taxotere and Herceptin (approx 4 ½ months in total for chemo), followed by a year of Herceptin and 5 years of Tamoxifen. The radiation follows the chemo.

Where he threw us for a loop was in recommending that I go to St. Mike’s for treatment where they offer a different protocol – TCH. He feels this is my best treatment option, is the best treatment available and is currently the proven standard in Alberta and the US. This is available at St. Mike’s because they are combining this protocol with a trial with a drug called Avastin. But either way with this trial I get the TCH protocol which, in his opinion, is better than the FEC protocol currently available at PMH. The benefits of this are that I would receive the Taxotere and Herceptin at the very beginning – the “T” and the “H” of TCH (targeting the very essence of my type of cancer right away) and avoid some of the other more negative side effects of the FEC treatment protocol. Other than this difference the duration of this treatment is the same. After about 4 ½ months of treatment I would return to PMH for the radiation.

He was really quite firm that this was the bet route to go. PMH will also soon offer this treatment but they don’t have it yet (complicated to explain but I will if you want me to).

Long story short…I am going to see the oncologist at St. Mike’s, hopefully in the next few days, to discuss participating in their program. If for some reason I decided not to go that route, the doc a t PMH said I could go back to PMH and begin chemo there with no time lost. He did however say that he’d likely want to see a brain scan…to figure out if I was crazy for not going to St. Mikes…

That’s it for now. I’ll talk to each of you over the days to come but wanted to give you this basic info as quickly as I could.

Thanks for your support,
xo cw

 

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The Sisterhood

Shortly after my diagnosis someone referred to breast cancer as “the Sisterhood that nobody wants to join.” A kind of conscription-based sorority, with an irrevocable lifetime membership.  

 

Once you’re in, the Sisters just kind of …find you.  You can be anywhere, doing something perfectly ordinary, and – poof! –  a perfect stranger suddenly appears with a knowing look, a quick question, and a kind word or good deed. 

 

It’s a bit creepy, but in a nice way.  And it’s uncanny how they spot you.  Well, maybe not “uncanny” – the bald head is a bit of a give-away and if you’re a woman, statistically chances are it’s breast cancer. 

 

I never liked the idea of sororities – and if forced to sign up for a women’s club I definitely wouldn’t have picked this one.  Yet here I am: a full-fledged member of the Sisterhood, benefitting from the kindness of people I’ve never met or barely know.  The woman at the bank, the woman at the EI office, Libby, Amy, Patty, the woman in the grocery store, the women who read and comment on this blog…The list is long. 

 

No matter how much support you have from family and friends, the women in the Sisterhood have a special way of taking the “alone” factor out of cancer.  They take it and stomp up and down on it and kick it in the hind parts for good measure.  They show you that you can manage because they managed, and they’re still managing.  No one makes you feel like you can beat it quite like someone who has the battle scars to prove it can be done.  Even if it’s only done a day at a time.

 

 

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The New Abnormal

A lot has happened since my diagnosis back in March.

 

I’ve had tests – mammograms, ultrasounds, biopsies, MRIs, scans, x-rays and a few things that involve being injected with a radioactive tracer fluid, just in case I don’t already have cancer. 

 

I’ve had 2 surgeries – a lumpectomy and the removal of several lymph nodes.  I’ve walked around with a drain hanging out from under my arm for several days.  I’ve had a large button-like thing implanted under the skin on my chest with an artificial vein threaded into my jugular to help make being repeatedly injected easier on me.  I’ve had 5 rounds of chemotherapy – today being my fifth.  (Chemo days are milestones marking the progress of my treatment; kind of like little birthdays, except way more frequent and way less fun.)

 

Through all this I have been treated with great kindness and respect by the people responsible for my care.  I’ve had many occasions to be grateful to my team of talented doctors and to the much-maligned health care system that has made my treatment possible, and more importantly, swift.  I’ve also frequently marveled at the incredibly efficient, patient, strong-stomached beings that walk among us called “nurses.”

 

So here I am: bald, scarred-up, and routinely pumped full of poisons.  I have trouble sleeping and sometimes I’m very sick, or in a lot of pain.  This is life with breast cancer. The road can be long, dark, and scary – but on the upside I’ve saved a lot on waxing this summer, acquired a French silk scarf for my head, and met some amazing people.   

 

While not exactly compensating for it, I can see that this curse comes with its blessings.  For me the greatest of these has been watching my family and friends rally around me like a motley army of ferocious angels.  All these people I love have schooled me on what love can do, and it’s a wee bit humbling.

 

As bizarre and difficult as my life has become in many ways, I do manage to forget all about cancer sometimes.  I look in the mirror and see Baldy looking back and I’m surprised for a second that it’s me: that girl with cancer is actually me.  Or maybe more to the point, I’m still me even though I’ve got cancer.

 

That was one of the things that scared me most when I was first told I had breast cancer; I feared that I would lose my identity to it, become That Girl With Cancer. (That, and of course that I’d die.)  My husband and I have a beautiful daughter, a great group of friends, we’re close with our families, and we struggle to balance it all with our busy careers. I liked my life, and I wondered, would all the things that define who I am go the way of my ponytail and ability to keep food down?  

 

But months down the road and here I am.  Of course cancer and treatment have altered my life dramatically.  Sometimes I’m numb, sometimes defiant, sometimes tearful, and sometimes I just keep moving through the moments of my life as though it’s all perfectly normal. 

 

It’s become my new abnormal.  But it’s still my life, and whatever changes have come I still feel like myself.  I may not look the way I used to, but I’m not That Girl With Cancer, I’m still me.  Just balder.

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