Tag Archives: fear of dying

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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Scary Movie

It was a dark and windy Friday night, when the creeping terrors began to stalk me… inching ever-nearer… closing in closer and closer around me.  There may as well have been a shaky camera shot from the psychotic killer’s point of view (I guess that would be a super-magnified shot of my cellular activity) and foreboding, eerie music. 

It’s my own private horror film, ladies and gentlemen, with screenings nightly. 

And seriously, you can ask my big brother, I cannot watch horror films – never could.  I’m a total chicken.  I watched The Shining in the ‘80s and I still get nightmares about those creepy twins in the hallway.  Depending on the carpet and wallpaper, I won’t walk unescorted down certain hotel corridors to this very day. So you can imagine how well I do when the horror film plot centres around me as the constantly stalked target of unspeakable evil.

And Friday night, there I was once again, playing the victim, getting all freaked out and terrified and tearful. I slid deeper under the duvet, but it was no use trying to hide! The floorboards creaked in the hallway and the bedroom door slooowly opened… And in walked my husband.

“Hey. What’s going on here?” he asked, seeing me all balled up under the duvet, hugging my knees.

“Um, just having a little freak out.” I squeaked.

“Ohlalamonamourvraiment” He said, just like that, all in one mashed-up French word that basically means “Oh no, not again.” He plopped down on the bed and gathered me up in his arms.

“Yup,” I said, “I’m freaking out that I’m going to die and wondering how you and Georgia are going to handle it…”  Which was only partly true.  What I was specifically freaking out about was whether Georgia should be at my funeral or whether it would screw her up for life.

I know. How morbid! How horribly melodramatic!  Even I can’t stand it – I want to slap myself to snap me out of it. 

Luckily I’m not in charge of consoling me and my husband isn’t a slapper.  Usually he lets me cry it out, probably feeling helpless as hell, until he can safely say something to make me smile or laugh and we can wade hand in hand out of the muck of fear and sadness onto terra firma again. Or terra temporarily less squelchy.

Not this time.  This time he wasn’t having any of this terrorized woman hiding under the duvet crap.  He was even a little bit stern with me (which honestly is a tactic I might employ with myself if I were in fact in charge of consoling me.) 

He told me that I am not gone yet and that I need to stop imagining myself gone.  He asked me – actually pleaded with me – to stay here-and-now, to try hard to stop thinking about death.  And if I can’t, then at least to try to stop letting it into the bedroom at night right before I’m supposed to fall asleep, because even if it can be liberating to confront fears of death, it sure isn’t conducive to sleep.

This is obviously extremely sensible, extremely practical, especially coming from a Frenchman.  And he wasn’t taking no for an answer, either.  So I agreed.  Actually I was surprisingly relieved to be bossed around like that; to be instructed to stop thinking about the big D, just when I had laid claim to being allowed to think and talk about it whenever I want to.  Because I realized that it’s a fine line, and if I’m not careful, it’s not me that lays claim to the fear, but the fear that will claim me. 

Not that anybody should get any ideas about bossing me around on a regular basis.

Now, what I really need to do is move the stack of cancer books away from my bedside and get my hands on a few good novels. Preferably not anything that involves creepy little girls with big foreheads and matching dresses.

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Chasing Trials South of the Border

Yesterday marked five weeks since I last received treatment for my cancer, thanks to low white blood cell counts preventing treatment in the weeks before my last CT scan.  Five whole weeks since the last time I was given anything at all with which to combat this disease.  They may say my cancer is unresponsive to treatment but something must have been making a difference, because in the past few weeks the cancer has noticeably advanced. I can literally feel it advancing. There are lumps in places there never were before, and the old, familiar (once disappeared!) lump in my neck has grown to the size of a ping pong ball.  Plus, my breathing has become a bit more laboured, and my coughing fits are sometimes so violent and unrelenting that I end up in tears.

To have the little flickering light of opportunity that the Montreal drug trial represented snuffed out at a time like this was utterly devastating.  Universe, you are a turd-head.  I ask it again: Why do Nazi war criminals and child molesters get to die of old age?  Who’s in charge here? And don’t give me that “mysterious ways” crap.  Come over here and watch me try to catch my breath long enough to read my kid a bedtime story and then talk to me about mysterious ways. It’s like the universe is being run by a schoolyard bully who is high on acid and has grown weary of torturing cats.

Alas, crying “Not fair! Not fair!” isn’t going to get me anywhere. My husband and I wiped our tired eyes and dusted ourselves off.  Time to get back on our feet, yet again.  Time to act.

So yesterday we went in to see my oncologist, fully prepared to coerce, plead, blackmail or otherwise drag her into a more active role in our desperate pursuit of a drug trial.  Instead, we were pleasantly surprised to find that she was instructing us on the need to take immediate action and to move ahead with applications for all potential TDM1 clinical trials simultaneously. Her sense of urgency, it turns out, is equal to our own. Perhaps greater — I was almost alarmed at her no-time-to-lose approach.   

In addition to the Great Trial Chase, we covered every physical concern I have, from the ping pong ball to the coughing fits. She made suggestions, proposed options, and was sympathetic but serious.   

In short, I felt in every important way that I’m still her patient, and that she is committed to giving me the best care she can, even though this clinical trial quagmire is relatively uncharted territory for her too.  She is “very busy” it’s true, but she is not the problem in this equation.  If I point my finger (and I do) it’s not at her. I’m pointing it at the system’s treacherous gap, the one into which I have fallen and am struggling to clamber out of.   

Anyway, while feeling good about my oncologist is important, what really matters is that we are once again moving toward doing something to push back against this cancer: We left with the enrollment process underway for three different TDM1 trials at six different sites in the U.S — several of which we have unfortunately already heard are closed.  It’s a nail-biting time, trying to get into these trials. And while we have always said that what matters is that I get the right drugs, and not where I get them, the logistics and finances of pursuing treatment in the States are a bit daunting.  But we’ll figure something out. First, I need to be accepted into a trial somewhere, then we’ll figure out how to get me there.  We have to.  What choice do we have?

I really believe TDM1 is promising, and right now all my energy is being directed at getting into one of these trials. I’ve literally been at it since I woke up this morning.  I forgot to eat.  I forgot to take my vitamins. I ran a bath and let it get cold.  All that matters is getting into one of these trials.  Okay, eating matters too.

But will it work?  Something has to work.  Last week, caught between the nightmarish fear of my own death and clinging to the faint glimmer of hope represented by the Montreal clinical trial, I tearfully asked my friend Eden, “But what if we go through all of this and the clinical trial doesn’t work?”

And she said, “I know. But what if it does?”

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Talking About It

My life is still reverberating from the act of talking and writing about the idea of my own death.  Reverberating in a good way.  It feels like something happened to the weight and girth of the subject; like I can get my arms around it and shift it to a more comfortable place, instead of just feeling crushed by it.  When it was just in my head it was menacing and bullying – but when I talked about it with the people I love it turned out that my private hell was not mine alone.  My fears became our shared fears (sorry about that) which allowed us to feel like we could at least face them a little better because we were facing them together.  It was the equivalent of throwing fear in the dryer for a couple of hours: shrinkage ensued.

And then, there we were, my parents and I, sitting on my bed one night talking about it again for maybe the third time in as many days, and not even crying that time.  Or, there I was, dropping it into a conversation almost casually: “…because if I die while Georgia is still really young I want to try to make sure she won’t turn it around and make it her own fault, the way kids think its their fault when their parents get divorced.”  And there I was, yes, blogging about it to the world at large.

(Okay, seriously, blogging about it…  Do you have any idea how naked I felt? It was like streaking through a stadium – although this little world of my blog actually seems far more intimate, so maybe it was more like streaking through a house party.  But, still.  I dare ya.)

It turns out that this unbroachable, unhappy, unfathomable topic is not so totally taboo after all.  I’m not saying I’ll be bandying it about at cocktail parties (“Nice to meet you. I’m afraid my cancer is going to kill me and I won’t get to live out my beautiful little life. Have you tried the stuffed mushrooms?”) I’m just saying it’s more manageable than I thought it would be. And based on the feedback I’m getting, I’m beginning to think that talking about it has possibly made this nightmare a little less nightmarish for everyone else, too. Talking about it means that it’s okay for people to think about it; they’re not betraying me or failing to have enough hope if the idea of losing me enters their minds.

Anyway, it feels like I travelled a long, long way last week, from a place of fear and darkness to a place with at least enough sunlight to keep a small houseplant going.  A huge part of it has to do with identifying a clinical trial and getting a plan for treatment underway. This is undeniably true. But I also attribute the return of my battle-scarred optimism about my chances of living to getting the subject of dying off my chest.

Who knew it would be so liberating?  And can I continue to address it without becoming a freaky goth person?  Because after the initial gruesome confrontation – after the first time I said the words out loud – it became easier and easier to talk about.  Which meant that it was no longer necessary to try not to think about it.  Which meant, paradoxically, that I and those around me thought about it less.

Like my friend Eden pointed out, it’s kind of a relief to be talking about it now when we don’t have to. Better we face it because we choose to and not because it’s being forced upon us.

In other words, I’m not dying – I’m just talking about it.

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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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Thank-you

At first when I began reading the comments to my last post (and getting e-mails and messages) I felt the comfort of it as something faintly glowing in the darkness, like an electric heater in an abyss. Then the compassion and kindness actually started to envelop me.  Now I’m kind of engulfed – but in warmth, not flames.

I’m frankly awed by so much raw emotion and all that big-heartedness coming at me from who knows how many different directions; everything converging in a place so full of empathy and love it’s humbling to find myself at the centre of it. Humbling and overwhelmingly comforting. It’s a strange sensation, watching a phenomenon of humanity at its best and then realizing you’re a part of it. I feel completely blessed, as blessed as someone with no religion and too much cancer could ever possibly feel. You all helped me to open at least one tightly shut eye and consider unfolding myself from the fetal position while I was free-falling into darkness, and for that I am hugely, immensely grateful.

Becasue it was quite a fall. I fell so swiftly into that darkness that I think I hit the bottom not with a splat so much as a bounce. Which would explain why I have the sensation that I’m already coming back up from the depths of despair. Not with anything near the same velocity as that with which I fell mind you, but the velocity is not the point, it’s the direction that counts: up.  

Along with reading your comments and e-mails and texts, I did some other things to help propel myself upwards: went to a salon and got my blonde hair back, escaped the city with my little family, ate chicken pot pie, drank champagne, and began formulating a plan of action…  It seems to be working.  I’m not falling anymore, I’m climbing back up. Slowly, stumbling, and in tatters perhaps, but up nonetheless.

And importantly, up or down, it’s been made absolutely clear to me that I’m not going anywhere all alone. So, if you’re coming with me, buckle up – this part could get a little bumpy.

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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.

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In-Between Days

I was reading a book last night in which the narrator said something like, “Each day is someone’s first and someone’s last, but all those in between become just another day.”  To which I thought: “What complete B.S. — surely it’s all the ones in between that count?”

Then, since my birthday is this week, I lay there in bed thinking about first days and last days.  My first day was 38 years ago… When will my last day be? And that’s when the thought popped into my mind: “Wow, we should really celebrate my birthday this year because I may not have very many birthdays left.” 

Um, whoa there. I just got fantastic results on my latest CT scans. Where did this party-crashing thought come from? From whence did this completely uninvited and so out of step with my little tango with cancer, icky thought emerge?  This really, totally depressing, totally miserable little thought.

I mean — sick or not, old or young — of course it’s natural for people to entertain thoughts of their own demise from time to time.  I myself have made a lifelong game of selecting my own funeral music.  (‘She’s Gone’, by Hall & Oates, is the current frontrunner.)  But this thought of having only a few birthdays left was just so… Melodramatic? Woeful? And yet so powerful.

At that moment my husband came in to the room, saw my face and immediately took me in his arms and asked me what was wrong. Through the tears that ensued, I managed to mumble the may-not-have-many-left thing into his shoulder.  “Mais non!” He said, squeezing the bejeezus out of me (did I mention he’s French? and absolutely dashing, not that it’s relevant?) “What could make you think such a thing? You know that you will have as many birthdays as I know I will have — nobody can say how many they have left!  Non! Those stupid spots are shrinking and that’s that!”

And, actually, a few sniffles later, that was that, because he has a way of comforting me and making me laugh with his stubborn refusal to let anything scare me so long as he can help it.  He has a conviction that is deep and strong and it says “you are going to live” — and I hear it every time.  He also has a whole sort of talk-to-the-hand thing that he does with the dark thoughts and it works like magic to quell my fears.  At least it did this time. And probably will again next time, and the time after that.

So, I’ll be celebrating this birthday – of course I will, I love birthdays, mine or anyone else’s (when I remember them!) First days, last days… they matter too.  But it’s all the ones in between that shape a life. And yes, maybe they’re numbered, but they’re numbered for everyone.  All the more reason to enjoy them. Yesterday was just another in-between day, and look what happened: I read a book, got freaked out, and then wound up falling in love with my husband all over again. Or remembering why I fell in the first place.

So let’s hear it for in-between days, however many or few of them there may be, and for those we spend them with.

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