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.
A little while ago, I wrote about trying to talk to a child about death and have since been exploring the topic on and off with other parents I know. Below is an e-mail excerpt from an old friend who actually used to be my teacher and mentor in high school. Her 15 year-old son Julian underwent treatment for cancer last year (but just celebrated an all-clear CT scat last week – hurrah!!!) and I always say that I would rather be in my shoes (with the cancer happening to me) than in hers (with it having happened to my child) – but the truth is, given the choice, neither of us would choose any of those shoes; we’d gladly walk barefoot forevermore. Over coals, even. Anyway, I thought her story about talking to her son when he was just four years old about the recent death of their pet rabbit was heartwarming, and captures the poignant innocence and confusion of a child’s perception of death – and the accompanying general feeling of parental ineptitude on the subject!
Our rabbit died (Fluff-fluff, named so by Julian who pronounced it Luff-Luff). She was litter trained and beautiful, by the way. But, she died during surgery which I would never do again. (You’ve heard the expression ’scared rabbit?’ She actually died of a heart attack after she woke up fixed, and I think she was scared to death.) She also used to ride in the car with us and sit on the table part of Julian’s car seat. We almost caused some accidents by mesmerized and amazed drivers. Anyway, she died and I cried and cried and cried and we buried her in the back yard, in the garden. We had a little ceremony and I frequently mentioned the word ‘died,’ so Julian would get used to it. About four or five days later, Julian and I had this conversation:
Julian: “Mommy, I think something’s wrong with Luff-Luff.” (Did I mention that this story has some hilarious moments?)
Me: “Yes, Darling: there is. She’s dead. She died.”
Julian: “I know, but something else is wrong.”
Me: “Oh my. What’s that?”
Julian: ”She’s still in the ground.”
Me: “Yes, because she died. She’s dead, so she’s still in the ground.”
Julian: “I know, but she’s not coming up.”
Me: ”Coming up? Like a flower?”
Julian: “Yes. Like that.”
Me: “Oh. Well, that’s because she’s not like a flower. She’s going to stay in the ground and become part of the earth, but I know some flowers are going to grow on top of her.”
Then he cried on and off for some days. Death is crap. The worse death moment of my life was when Sick Kids gave me a book on how to tell your child he’s…you know what. I was catatonic for several days: then I stomped on, shredded and burned the book.
Anyway, I think you’re doing great with Georgia. [And] I’m rsvp-ing right now to your sayanara cancer party.
Anyone else with talking-to-kids-about-death stories or ideas or tips – please, bring ‘em on. It takes a village, remember?
How do you talk to a 3 year-old about death, especially when you have cancer?
For a while now, my husband and I have anticipated that Georgia would start asking questions we don’t quite know how to answer; that she would be tuning into our conversations about cancer and possibly even getting confused or frightened. We know she’s absorbing words like “cancer” and “treatment” and “chemo” – and we don’t know how to help her make sense of them without scaring her. She could easily mix her understanding of my regular visits to hospitals and doctors into what little she grasps about death from storybooks* and movies. We knew we needed to be able talk calmly and directly with Georgia about death and dying – but we didn’t know how to get there.
Enter Morgan Livingstone, Child Life Specialist and Georgia’s new buddy. She came into our lives when I contacted Rethink Breast Cancer with my concerns and asked if they had any programs to support parents of young children. I was amazed to find out that they could send a specialist to our home to explore through play what Georgia might be thinking or wondering about.
Morgan and I talked at length before she met Georgia so that she would know how my husband and I feel; we speak pretty openly about my sickness and treatment and prognosis, but we hadn’t figured out how to answer the tough questions. Morgan has good ideas, and helps us to frame what we want to say. She tells us we need to use the actual words “death” and “dead” because little kids take things literally and euphemisms just confuse them. She also advised me to give a name to my illness; to say that I sometimes don’t feel well because I have cancer, and that it’s not like a cold or flu and that Georgia can’t catch it from me. Above all, Morgan stresses the importance of being consistent: she says that Georgia will come back to a subject over and over again until she thinks she understands it, and that we can’t change our story on her or she will become more confused and less trustful of the subject – and possibly of us.
Smart lady, our Morgan. She’s like a hip, blonde Patch Adams. She comes to visit Georgia every few weeks and they play and talk and make things together… Later, Morgan and I debrief to get an idea of what might be going on in Georgia’s mind; where she is in her understanding of things.
We all love this woman. She does amazing work – and Georgia is especially crazy about her.
But still I struggle with how to possibly answer two questions in particular, should they arise: Mama, will you die from your cancer? and What happens when someone dies?
To the first, on a good day I think I can say “We don’t think so. Sometimes some people die from cancer, but I have very good doctors and very good medicine to make me better.” I can say that because I believe it’s the truth. Most of the time.
The second question, What happens when someone dies? is a mighty big one, especially for someone way too young to pronounce Kierkegaard (is one ever old enough?) or know what “theology” means. Then there is the problem of my husband and I having rather ambiguous beliefs and zero affiliation with institutional religion. We don’t do church, mosque or synagogue, and we think white folks who shave their heads and drape themselves Buddhist robes are a little goofy, but we’re pretty sure they’re at peace with their pretentions, so more power to ‘em. Actually, I envy anyone who subscribes to any faith, because I’m sure it is a great comfort to have a deep reservoir of belief to dip into in dark times. Basically, my policy is, as long as you don’t get all fanatical with people who don’t share your beliefs, then go for it: get your faith on.
But, formally faithless though I may be, I do firmly believe in the soul. And after much searching of it, and no small amount of discussion with my cancer shrink, mom, and husband, I have come up with this answer to What happens when someone dies:
“We don’t really know. Different people believe different things happen when we die. You can ask them what they think too. Like Glamma (Georgia’s grandmother) – she believes we all go to live with the angels, and that might be what happens. I do know that when someone dies we can’t see them or hug and kiss them anymore. But even though you can’t hug and kiss them, they never stop loving you and you always have them in your heart, wherever you go, forever.”
That’s my first draft. I’m still working on being able to get past the part about not being able to “hug and kiss anymore” without completely choking, because I can’t imagine a time when I can’t hug and kiss my Georgia, and all the other people I love so much. And I hate to imagine a time when they can’t hug and kiss me.
Sure enough, the other night I very nearly had to deliver that little speech. My husband was working late and Georgia and I were curled up together watching the animated movie “Up” (a safe-enough sounding title, I thought) when of course the man’s wife up and dies and Georgia asks:
“Is she dead?”
“Yes, honey she died.”
“Was she in the hospital?”
“Did you die?” (This, presumably, because I go to the hospital a lot.)
“No, I’m alive, I’m right here with you. People go to the hospital for lots of things, like to get better and fix boo boos.”
“Why did she die then?”
“I think because she was very old.”
“Why is that man sad?”
“Because he loves her and he can’t see her anymore. He can’t hug and kiss her anymore.” (Face turned away, keeping voice steady… or steadyish.)
“Because when someone dies that’s what happens: you can’t hug and kiss them or see them anymore, but you can still love them and they always love you. And you can still talk to them.”
Thankfully at this point the old man in the movie corroborated my explanation by addressing a photo of his dead wife, God love him. Then the story continued on another path, and she was absorbed in it once again. “What’s that boy doing..?”
Whew! I silently sighed my relief as she moved on. For now. The questions will be back again. And I know I need to be ready, or as ready as I can be.
Onward, brave soul – this is motherhood and you signed up for it. But keep the Kleenex handy.
*By the way, has anyone else noticed that almost all the Disney princesses are motherless? Seriously, what is up with that? It’s bizarre enough that they all look like strippers, but strippers with dead mothers? Creepy….
A big thank-you to everyone who weighed in & commented on the ‘23% chance of survival’ issue – I loved the story of a 9-years-and-counting survivor of Stage 4 HER-2 positive cancer on the Tell Her-2 website (thank-you Carol!) and had a few more amusing e-mails from friends, like the one suggesting that 23% of people are just talking out of their @$$es.
But this comment from Pam was the icing on the cake, the cherry on top, la piece de resistance:
“I think the study that was referred to in the Ottawa Citizen was this one:
It’s important to note that they refer to a 23% rate of recurrence for HER2 positive breast cancers NOT a 23% survival rate. Hope this helps!”
Oh it helps, Pam! Enormously, massively. Curtains for all but 23% of us? Totally scary. But a 23% chance of recurrence? Pfffft – whatevs, already living it.
The study’s statistics on recurrence and survival rates for HER-2+ vs. other kinds of breast cancers indicated what I already knew; that it’s not quite as rosy for us HER-2 types. But it sure as heck isn’t as grim as a 23% vs. 90% chance of survival:
“In those analyzed with HER2 positive tumors, the five-year, recurrence-free survival was 77.1 percent; in contrast, HER2 negative patients’ recurrence-free survival was 93.7 percent. Five-year distant recurrence-free survival was 86.4 percent in women with HER2 positive tumors compared to 97.2 percent in women with HER2-negative tumors.”
I hereby apologize to the authors of the study for calling you hacks. I was a little upset at the time. I still remain steadfastly suspicious of all statistics, but I now realize you nice Texans were actually just trying to get women with early-stage HER-2+ cancer access to Herceptin, and I wish you every success in that noble pursuit.
There remains the issue of just how grossly irresponsible the Ottawa Citizen article was. I’m trying to imagine myself as that writer, on deadline, trying to put together a positive piece about a new service for people with some kind of breast cancer that I’ve never really heard of, and oh! Look, here’s a study! Let me see, should I report that there is a 23% chance that HER-2+ cancers are going to come back? Orrrr, hang on a minute, maybe if I just warp it beyond all recognition to say that only 23% of these people with HER-2+ cancer will live, that would be better. Recurrence is just so, I don’t know… vague and neutral. Death is so much stronger. Yep, I think I’ll just go with death. Great, all done! And I still have time for lunch.
Rather alarming. Rest assured my letter to the Citizen to requesting a correction is already underway. Thanks everyone for getting me through this darkness and out to the light at the end of the tunnel of incorrectly reported stats. That’ll learn me to pay attention to numbers. I’ll stick to words from now on, they’re so much more reliable. Can’t put a number to hope and courage and chutzpah, can you? I rest my case.
You know what I usually do when something really upsets me? I usually sit down on my kitchen floor and cry. It’s not the most comfortable place to cry (that would be my husband’s arms) but I often end up there. I seem to have a need to get low to the ground. Get terra firma (or kitchen tile) under me so I don’t wobble and break like a teacup.
I tell you this because I recently spent some time on my kitchen floor, right after reading this story in the Ottawa Citizen, which talks about a new program for young women with HER-2 positive breast cancer. “Sounds great,” I thought. “Maybe I’ll get involved,” thought I.
And there, smack in the middle of the article was this line:
“…it’s easy to see why HER2 is so feared: In a study last year at the University of Texas, women with early stage HER2-positive tumours were reported to have a 23-per-cent survival rate, compared with 90 per cent for breast cancer patients who do not test positive for the protein.”
Plop – straight to the floor. Tears (big fat ones) and terror (also robust) ensued. How dare they? How dare they just hit me with that 23% when I really and truly believed that I would beat this? Believed it to the point that I publicly chastised anyone who didn’t believe it. I more than believed it – I was full of conviction; I knew I would beat it. And then, one little line in one little article sends me to the kitchen floor, my conviction shattered and my mascara all over the place??
Yes, actually. That’s all it took. Suddenly I was aware that my steely resolve and hell-bent determination are a little more fragile than I realized.
Slowly, the fatso tears became little spatters and then stopped altogether and reason – or my version of it — took over. I concluded that deeming the University of Texas researchers a bunch of hacks was appropriate. As was feeling very unkindly toward the reporter who included that line in her story. Thanks a lot, stupid no-cancer-having lady, for your blithe reference to these death stats concerning something I have to live with every day. Why don’t you go back to writing about five great picnic spots in our nation’s capital and leave me to my shattered optimism.
There – being nasty made me feel better already. Next I went into action mode, pouring myself a nice big glass of wine and Googling all the statistics for various kinds of death, thinking surely it’s harder to survive car accidents and parasitic infections?
That’s when I found a story about that crocodile hunter guy. Yes, the crocodile hunter guy. I know this sounds completely irrelevant, but stay with me: There he was, Steve Irwin, cheerfully bounding around swamps and wrestling dangerous reptiles one day – then suddenly pierced through the ticker by a normally gentle sea creature the next. He didn’t know what was going to happen to him when he went into the reef that day. He probably had fewer reservations about swimming with those big portobello mushrooms than he would ever have had about hanging out in croc-infested swamps – and you can bet the stats for crocodile deaths are much higher than for death-by-sting-ray.
Which is when I realized that statistics are for morons. In reality, you can never know when or how you’ll die, you can only choose how you’ll live. Some people wrestle reptiles, some wrestle cancer. In the end, the obvious danger may not be the thing that strikes you down. After all, that’s why I still wear a bicycle helmet.
So, thank-you dearly departed crocodile guy – I bet you never thought you’d come to the rescue of a Canadian girl with HER-2 positive cancer. Life is full of surprises, and stupid statistics abound, but I am going to live. This cancer is not going to win. I knew I cracked open the Australian wine for a reason.