For the moment, the sun is actually beginning to emerge from behind the dark clouds for a change: we have found and are applying for a clinical trial at last!  The study sounds promising — the most promising of all the experimental drug trials we were able to find — and there is a study site in Montreal, which isn’t totally ideal, but it could be worse, it could be much farther from home.  It could be outside Canada.  I’m not sure how swift the enrolment process will be or how we are going to handle the financials or logistics, but I’m already feeling so much better and more hopeful just knowing that there is a plan underway at last. 

It’s amazing how much difference a little glimmer of sunlight can make.  We are going to be doing something.  And it might actually work!!

Unfortunately, getting to this point has been excruciating and, as anyone who read yesterday’s post can attest, the process has forced me to face the grimmest realities.  Among them, and second in grimness only to confronting my own mortality, was the realization that our medical system completely fails in its support of patients with cancers that don’t respond to standard treatment.  

The transition from a supportive, comprehensive cancer-care system to the bleak no-man’s-land of post-standard-treatment was so sudden and jarring that it took me a while to realize that I had in fact been left to my own defenses.  Apparently the system just isn’t designed to take you any further than approved drugs and standard treatments, so if you have to go the non-standard route, you have to navigate it yourself. 

Meaning it is up to the patient to research and choose her own clinical trial.  The patient, who in the majority of cases does not have a medical degree.  The patient, who is reeling from the news that there are no more treatments for her.  The patient, who is probably grappling with gigantic questions like “Am I going to die?”  The patient, who hopefully speaks English as a first language, knows her own medical history intimately and is handy with the Internet.

Aside from the basic impracticalities of this situation, it has the psychological effect of leaving the patient out in the cold.  It sends a message of hopelessness.  It says: your cancer is so bad, we’ve given up.

I believe I wasn’t totally abandoned only because I and my family reached out repeatedly for help to my oncologist, the hospital social worker, my amazing family doctor, a clinical trials nurse, and many, many other people.  I’m deeply grateful to all of them for their help, but I’m still stunned and alarmed at the totally unacceptable failure of a system I believed in and trusted with my life. 

But enough about all that for now. Really, I can be all stunned and alarmed later.  Right now I just want to enjoy the sunshine.

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.”

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.

 
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?

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?

Yeouch. 

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?”

“Yes.”

“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.)

“Why?”

“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….