Mar
10
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.”
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
Nov
05
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!
My fridge runneth over. This is what being blessed looks like. And you haven’t even seen my freezer!
-
- a fridgeful of love
Jul
25
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.
