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.”
Yes! Facing death, accepting it, does NOT mean giving up. It means freedom. Walking through the fear of death gives us freedom from the fear of death. I have to feel the (profound) grief of my inevitable death to feel the boundless joy of my present life. Leanne, if you can find the film “Griefwalker”, a doc about Stephen Jenkinson, GET IT. Love you. “We don’t know what happened but… the cancer is just GONE.”
You are an amazing woman. I wish I were you.
Judy
Oh God,Leanne! You’re brave and smart and totally beautiful. I’m completely awed.
Love Diane
I believe that Celia’s comments are very wise. It doesn’t mean AT ALL that you are giving up when you confront the possibility of death. If you can talk about it with those near and dear to you, and if they can allow you to do this and to reciprocate, then they are giving you a great gift, in my opinion. You are right. We all have to die. But death should come to those who have lived their lives, not to those, like you, who are young and who have so many things left to do. It’s not fair, but sadly life isn’t fair. I can’t know what you are going through. I can only imagine what it is like, and what it seems like is Hell. Many people whom I have met in the course of my work have told me that they learned to cope with illness such as yours by taking one day at a time, and by trying to live that day to the fullest – easy to say, but not so simple to do, perhaps. Can you see your psychologist a bit more often at the moment,maybe? It might be helpful. You will keep on fighting, I feel certain, with determination, bravery and humour. Up till now, the job you have done has been nothing short of stellar. Remember that expressing fears does not mean that you are succumbing to them. It does mean that you are confronting them. It’s much easier to spit in the eye of an enemy (be it cancer, one’s own mortality, or whatever) when confronting that enemy head on. Leanne, I am sending you love and positive thoughts, and I wish for you the strength to get through this very difficult time.
I think Celia and Gwen are right,and you should face the possibility of death, accept that possibility and THEN start to fight again. You must stop to fear of fear! You are strong and can do that!
I advise that because I did the same 3 years ago.
I was told then, that I will not live by Christmas time, if certain results will be true.For 6 months long we were waiting the repeated results. I went through the HELL itself.I was frozen from fear.And then I decided that I want to live until I live, not just be scared.I accepted that I might die, but I did not give it up!!!!!!!
The results were different, not good, but not
deadly either. As you see, I am still alive.And since that time I made a peace aggreement with he possibility of death, but I am still fighting against cancer. And I got back my peace of mind.Try it Leanne,we try to help you, we are with you, get out of fear!Love Eva
Hello, Leanne:
Me again! I went on to You Tube and found an NFB synopsis of Griefwalker that Celia mentioned above. I want to watch the entire documentary for myself. From the short excerpts that I saw, I really feel (and hope) that it would be helpful, and perhaps comforting, both for you and your family.
You are in my thoughts.
G.
Your honesty with yourself (and dare I now call us your public?) continues to amaze me. Hang in there chickie.
I am going to check out Greifwalker. Oddly, Stephen Jenkenson is a name I’m familiar with — he’s a mentor to some people we’re friends with and my husband and I have heard a lot about him. After reading Celia’s comment another friend e-mailed me to tell me about a Greifwalker screening + Q&A coming up in April. We’ll see where I am (georgraphically and mentally) — maybe I’ll go or maybe I’ll have already tracked down the dvd by then!
Regardless, I just want to thank you guys for your incredible support and thoughts on this rather terrifying topic. I mentioned to my mom that there weren’t a lot of comments on this post & she said “Well what on earth can people say? It takes all their courage just to read it.” And its true — it takes all our courage just to think about it. I can’t believe my family has endured actually talking about it face to face with me, but we have, and I can tell you honestly (really I’m not making this up) that it has made a difference. It already feels just a bit less horrifying — and even more importantly it has also made it somehow easier to really take hold of the flipside — the belief that I will NOT die.
Also known as the greased watermelon of hope.
l.
Sweet Louanne, I read and reread and reread your March 8 writings and my heart gives thanks to you for giving words to mine which I could not do in 2002, 2003, 2004…… Just want you to know that from diagnosis in March 2002, half a lung removed, serious chemo, forever radition, relapse in 2004, more chemo more radition, being told the cancer will go to my bones, I was pronounced CURED in
February 2010!!!
Reading your writings, I marvel marvel marvel at who you are (but then I always did :o))
Do drink that green stuff (I lived on it for over a year a couple of times a day) who knows???
You are ever gently in my arms and heart as is your little princess – I send my love to all of you – blesings, blessings, blessings.
If there is ANYTHING I can do, doctors to contat on your behalf you need but say the word.
With so so much love – ‘Glenda’
Doll, everying you write is just so poignant!! Your sharing on March 10 is the one I was referring to above – how you have touched my heart and how you continue to do so daily! I feel as though I am walking the walk with you.
Hugs, love and then some
Dear Leanne, You write very well and express the panic I have felt. Please take a look at my site and encourage others to do so. I believe the study I am participating in can help us all. http://www.ivfbreastcancer.com
Thank you Leanne, my wife is going through this too and your writings help me understand how she is feeling