Category Archives: Cancer

Not Fine

Dear Whole Wide World,

I’m not fine.

Really, really not-fine. And it seems like our culture is built around a number of fleeting encounters that ask the question, but discourage real answers. Too time-consuming. Too uncomfortable. Too intimate. How am I?

According to the doctor, I’m depressed. Post traumatic stress says one psychologist. Another told me my blood must be pure cortisol at this point.

Which pretty much means I’m a mess. The truth is, it’s been a long time coming. And while we still have nine months of chemo and a pretty sick girl stuck at home this week, this is as close to peace as we’ve had in a long time. Everyone else in the family seems to be doing relatively okay. Which is probably why my body/mind chose now to short circuit.

It’s not what I expected. I’ve got quite a bit of up close and nearby experience with depression and anxiety at this point in my life. I’ve even accrued a substantial resume of grieving for myself, which I’ve always thought of as a close cousin to depression. But seeing and being are vastly different animals.

I told my friend Liz that I knew I was going to break down eventually, and when I did it would be spectacular. I imagined something alarming… cinematic. Michelle Pfieffer in The Deep End of the Ocean when she realizes her baby is missing. Scarlet O’Hara in the face of defeat. Scared Sorority Girl number three.

No dice. I still look pretty much the same. Except my shirt may be inside out and I probably haven’t brushed my hair. Oh, and I wear glasses now, because contacts require effort. I place one foot in front of the other and somehow no one notices. All the screaming is inside my head.

Meanwhile my family gets to see me unravel every day. Playing ‘Pleasant Citizen’ doesn’t work at home; I just don’t have the energy. I crawl back into bed a lot. I hulk out over the smallest problem. My feelings are delicate flowers, wounded by the smallest slight (and I have teenagers, so you can imagine how well that’s going). I can’t fall asleep. I wake up in a panic and run to check if my children are still breathing. I clutch my chest to try and lift this weight off of it. Overwhelmed. At any moment, and sometimes for no reason, completely overwhelmed.

I used to whirl around in a tornado of efficiency – packing lunches and dispensing medications and solving problems. Now I just whirl around and around and around and forget what I’m supposed to be doing. I put the milk in the cupboard. I forget to start the car and am confused when it won’t drive. I need people to repeat things to me several times before they make sense.

I thought depression would be sadder. I still laugh and enjoy things, though nothing is as bright or clear anymore. I’m so touched and grateful that my family is picking up the slack and giving me the constant reassurance I seem to need.

And every once in a while I just feel fine again, confident that the worst is over and I can be myself now… wondering if maybe I’ve been overly dramatic in presenting this to my doctor and counselor. Then I unload the dishwasher and must retreat back to bed for a nap.

So why am I writing an ode to my mental dysfunction for the whole wide world?

Partly as an apology, because as irrational as it may be, I still carry a lot of baggage with me about being selfish and letting people down. I’m trying to figure out where it all came from, but I suspect it’s largely inborn. So, this is me, giving notice that I’m going to be taking care of myself first for a while. Because there’s still a lot riding on Mom, and I can’t take care of them if I’m not a healthy me.

All these months (years, let’s face it) of suppressing my own emotions and needs have been necessary. We’ve done the best we can, and we’ve had SO much wonderful support, but there’s a reason cancer parents have high rates of PTSD. In the face our worst nightmare we put on a brave face, sing a song, make a game of it… anything to make it easier for our babies. And our own trauma gets stuffed way down. Just yesterday I had to bring her in for another blood test. I crawled up into the bed with her, wrapped her in my arms (and legs) and tried to distract her while she cried and struggled and screamed. It was an easier one. She’ll never know how much it kills me inside, because Mom is always calm in the hospital.

I guess I’m also writing because I want the world to know that even though you might see my calm Mom face too, I’m not really okay.

And I’m okay with that.

So, if you ask me how I am, I might give you a polite lie and move on, which is probably easiest on us both. It’s not a social convention I love, but it’s the way things work. I’m getting good at evasive but true answers like “still kicking” or “hanging in there.” Sometimes, probably more often than is socially acceptable, I answer truthfully. “I’m not doing well at all.”

It’s a relief for me. It doesn’t need to be a burden for you. I don’t need to be fixed or saved. I don’t need platitudes or sermons or super-human effort from you (though I know these are coming from a good and generous place inside you). I just need to be seen and heard. “That sucks; I’m sorry” is the best response for me.

Someday you might want to give an honest, but uncomfortable answer too – on those days, I’m your gal. Not Fine is an awful and important part of being human.

 

So here’s me, learning this thing called ‘self compassion’ via counseling, writing, art, meditation, prayer, fresh air, silly tv shows, hot baths, talking, talking, talking, dates with my husband, anti-depressants… and most of all, lying in bed.

 

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That Was Easy.

In the olden days, before PVR and Netflix, we used to watch television commercials. We didn’t like it, but the only other options were mute and dragging my lazy butt to the kitchen for a snack. So we endured. If a marketing department had done their job well, then a piece of those commercials would stick with you for days, even years. A jingle, a logo, an image… haunting you in the most annoying way possible.

Staples Business Depot had one of those mental burrs – the easy button. The ad goes like this: a harried office worker runs into a problem, is utterly overwhelmed and in desperation presses a large red button with the word ‘easy’ printed across it. POOF! – the issue is resolved through the magic of superior business supply mojo. Meanwhile, the narrator declares, “That was easy!” The ad campaign  became so popular that they actually began to sell the large plastic buttons in their stores. We had one kicking around the office I worked in. Most do.

I never really got the joke. At least, I assume it’s supposed to be joke. The directions on the package instruct you to identity a difficult issue. Push the button. Listen to the message (a tinny voice declares, “that was easy”). Smile. And move on with your day.

I spend a lot of time wishing for an easy button in my life. I’m pretty sure a lot of my worst habits can be traced to this desire. I’m pretty sure a lot of our first world problems can too.

My daughter was in hospital again this week.

We’d been passing a head cold around the family for days (proving it’s not always good to share). But she seemed to be on the mend, just in time for spring break and, best of all, music camp. We decided to take advantage of our in-house babysitters and go on a date, before the teens left on their camping trip. On the way to the restaurant, Big Sister called to let us know that B was acting sicker than before and her temperature was climbing. By the time we raced home she had spiked a real fever, then coughed until she threw up. Cue the familiar and frantic dance of cancer families in an emergency.

Things can go very wrong, very quickly these days. We’ve been spoiled with several uneventful months cancer-wise, and I hadn’t even realized how much the terror and exhaustion was fading. I sat by her bed for hours and felt sorry for myself (I do that a lot these days).

Even with modern medicine on our side, something I am so deeply, deeply grateful for, there aren’t many shortcuts or quick fixes for our girl. The options range from uncomfortable to grueling, and even then there’s no guarantees. While there are times when it’s a blessing that she lives entirely in-the-moment, there are other times when it’s so frustrating being unable to reason her through the procedures she most hates, especially when she’s feeling rotten. Even though it’s necessary, I am heartily sick of holding her down while she screams and thrashes and cries in betrayal.

Pneumonia has, thus far, been one of our easier emergencies. We’re now home in our own beds, and every morning we drive back to the hospital for a few hours. I found myself telling a friend how everything pales in comparison to the heaviest chemos. Which is the most horrible thing to celebrate.

I think about that stupid easy button a lot. Imagining a world where it actually existed. Not just for cancer, but for all the things that make my life hard. POOF! Problems solved. Sickness cured. Anxiety gone. Disabilities erased. Relationships restored. Everyone agrees with me. Happy. Happy. Happy.

Why can’t life just be easy?

I don’t actually have an answer. There will probably come a time when I can wax eloquent about the beauty of struggle or the lessons we learn through the fire or some sentimental drivel like that. But right now I’m tired and frustrated. And I’m in no mood to ice over the shit and call it cake.

Life is hard. It just is. It’s unfair and it hurts. One of the things that seems more clear to me now than ever, is that we waste an enormous amount of time and energy distancing ourselves from sitting in this reality.

If not engaged in outright avoidance, we prefer to channel our experience of suffering through some pre-determined narrative to make it more palatable. You know the stories. The ones with a villainous other who we can blame for all our troubles – because anger feels so much more powerful than pain. Or the one where I am an overcomer, harnessing the power of <insert religious or self help or political or whatever story line> – where any feeling or experience that exists outside the lines must be brutally repressed.

There may be some truth in these interpretations of events – either an injustice to fight against or a power which transcends my suffering. I’ve certainly experienced both. But there’s more to every story than that.

Life is not easy, and neither is it simple.

That should be a depressing thought, but I find it liberating. No more tilting at windmills. No more sticking to a script. Instead I can just be.

After all, easy is a modern invention. Fast food and instant everything grooms us to expect POOF! Humans have been living hard lives, even harder than mine, for thousands of years.

Can I trust life, and God, and my own humanity enough to face reality head on… to dig into it and let it unfold? Unedited. Unpolished. Unrushed.

Life is hard and life is complicated. Important things usually are.

So here’s me, just as tired and frustrated as ever, but feeling a little less sorry for myself.

 


An Apple a Day

There are 740 unopened emails in my inbox. I used to blog at least twice a week; this year I’ve posted once, all year. I can’t remember when I last scrubbed my toilet, mostly because I forgot where I keep the toilet brush. I know I have one. Somewhere.

It’s probably not a surprise that I spend an inordinate amount of time staring blankly into space. Thoughts come and go, but the energy to shape and communicate them coherently remains elusive. I have wondered if this is depression. But it seems nothing like the dark heaviness that others have battled through. If anything, I feel emotions more sharply: incandescent joy, crushing sadness and chilling terror – and that’s just a night of Netflix. Don’t get me started on American politics.

There is so much right now. So much everything. And I feel unpeeled.

Which sounds like one of those dire, but vague status updates on Facebook. Obnoxious with its lack of information and obvious in its desire for sympathy. I apologize. Listing my every struggle and concern seems equally distasteful, but it does make me feel better. After all, writing is cheap, accessible therapy for me.

I have teenagers. I have special needs children. I have chemotherapy to administer each night and a marriage to maintain. I have homework from a university course (Spanish) as I inch toward my English degree. I have four children in three schools; two only part-time. I have physiotherapy exercises and pounds to lose. I have meals to make, friends to call, medical appointments and therapy sessions to coordinate, laundry to fold, lunches to pack… all the side effects of a wonderful, overwhelming, messy life.

And the driving. Oh, the driving.

It’s exhausting.

Life is very much right now. Small and urgent and in the moment. It reminds me of our brand new baby days, when my own identity was wrapped in and around the life of another; when ‘survival mode’ became normal.

Last month they wheeled my baby girl out of the operating room after injecting chemo into her spine. As they hooked her up to oxygen, a SAT monitor, a blood pressure cuff… I calmly ate my apple. She isn’t able to eat before a procedure so I’ve learned to snack while she’s getting her lumbar puncture. She has one almost every month.

It used to be a nightmare. I’d cry every time they ushered me out of the room and wait on pins and needles. The oncology nurse looked at me oddly as I crunched away on my snack. There was nowhere to put it down. I considered throwing it out, but it was a particularly good one, crispy and sweet. Ambrosia, my favourite kind. And I was hungry. So instead I shrugged my shoulders and kept chewing. I told her, “I’m pretty sure you can get used to just about anything.”

In the room next to us a mom was crying her heart out. Her child had been diagnosed that day. There seems to be at least one of these each time we visit. The other reason parents might be crying in the oncology department of Childrens Hospital is something I cannot bring myself to consider.

Here I am, in the middle of all this, eating my damn apple.

 Apple a day from Flickr via Wylio© 2012 Patrick McFall, Flickr | CC-BY-SA | via Wylio

So here’s me.


So Now What?

I’m back where I was when this crazy ride started 2 weeks ago. When we discovered our daughter’s photo had been stolen from my website, then published internationally to promote prenatal testing. When we chose to speak up, to take on our bullies in public and take the hits as they came. When we said no to worldwide media, reporter after reporter, as we focused on chemo and survival. When we flailed under a deluge of advice and help and yes, criticism, before giving the mess over to more experienced hands, hands we could trust. We are where we have been all along, in the place that really matters – at the bedside of our very sick girl.

Back in the hospital again, and somehow the hurt and outrage fades to the background. Cancer is good for very little, but it does bring perspective.

If I could erase this episode I would – it is the very last thing we needed. Stealing precious time and emotional energy when we need it most. Not to mention, such a disheartening sign of the world we live in, where anyone would so thoughtlessly and publicly disrespect a child, any child. I’m sure you can imagine the cruel remarks that have been unleashed on us as well. People can be hateful. There are some who quite plainly wish my daughter dead. Apparently I should expect this and am in fact to blame. Those ones seem particularly upset that I dare to speak up at all.

There are already too many in the world who shrug their shoulders and “what-do-you-expect” their way past all that is unkind and unjust around them. We must live toward the world we want. Even if that means making a fuss.

I’ve learned so much from others who’ve opened up their lives just a bit, to give us glimpses into their reality. That’s the beauty of storytelling: in blogging, photography, poetry, song, film and thousands of other ways humans express themselves. And every time you put yourself out there, it’s a risk – of being abused, misunderstood, misused, co-opted by some other agenda… but we keep doing it because to hide is to let them win.

Let’s be clear, I’m not leaving my blog up to be petulant or to thumb my nose at the risks. It totally freaks me out at this point. I feel exposed and exhausted and I have more important matters in my life.

I’m leaving it up for the same reason I posted that photo in the first place: because it matters that people hear these stories – stories of a good life with a child who has disabilities. Real and messy and sometimes hard, but absolutely worth the trip.

In a world where pressure and fear is brought to bear on expectant parents whose children may have a chromosomal anomaly, people deserve the truth from those of us who actually know. Life has never been better for people with disabilities, and it’s only getting better. That’s not to say it’s easy, but the best things in life rarely are. When’s the last time you heard any parent raving about how easy parenting is? That’s not why we do it.

Ask a parent what matters most, what makes them smile and gives their life meaning. Ask a parent of a child with disabilities. Here’s a hint – exact. same. answer.

Having a child like my daughter is no tragedy.

You have questions…
The biggest question we’ve gotten is what can I do? There have been so many offers that we are humbled and overwhelmed. The cruel and callous should be on notice – they are woefully outnumbered. The answer is simple. The best way to help us, to help my daughter, is to embrace ALL people.

Is that overreaching?
I don’t care. People matter. We have the ability, the innovation, and the resources to make room for everyone in this world – we simply lack the will to do what it takes.

If you need a suggestion, we believe in the work of the Down Syndrome Research Foundation – who seek to create and implement the best practices in reading instruction, speech therapy and life skills development for children like my daughter.

donate

For all who’ve asked for an update – thank you. Our girl is very sick, but she is fighting through. She hates the “strong medicine” that has taken her hair, keeps her isolated and makes her feel yucky, but we are so grateful that it is keeping the leukaemia away. 

Right now her immunity (ANC) is at zero – too low to count. She has a number of infections and must remain in hospital until she recovers enough to better fight them off (ANC of 0.3). This is our last week of Delayed Intensification – one more IV chemo on Monday then her immunity counts need to recover (ANC of 0.75) before she moves into what should be a less brutal 18 months of chemo. If all goes well she may even be able to return to school part time this fall.

She’s very excited about growing new hair this summer. Brown, she’s decided. It’s impossible to say what colour or texture may grow back, but if anyone can control it by sheer willpower, it’s her.

 


Consumed

Alone
in a crowd of friendly professionals
masking desperate and exhausted
with awkward quips and acts of conspicuous competence.
As if I too
must earn my credentials;
A place at this
examination table.

On the menu,
once again,
is my child.

Her comfort, her privacy, her hair…
Our resources, our energy, our sleep…
Devoured
in five courses of medical necessity.
And for dessert:
sanity.

Bon appetit
Insatiable, uninvited guest.
Take what you want from me.
Just leave her
Alone.

IMG_2196.JPG

So here’s us, on the upswing after 2 horrible weeks. Mouth/throat sores are a special kind of hell. She’s now eating through a NG (nose) tube as we brace ourself for 3 more rounds of that particular chemo. 4 months down, 21 to go.


All That Vaccine Ugliness

Vaccine articles abound these days. Not to mention Youtube rants, Facebook debates, pithy graphics and pinnable quotes. It’s the issue-du-jour in the parenting universe; one that doesn’t seem to be losing traction, even as both sides make little to no progress in changing minds.

In fact, those most invested in the issue seem to be polarizing to greater extremes – discussions devolving into calls for lawsuits or criminal charges, shocking rumours of evil intent and ugly name-calling.

Straw man arguments are all the rage in this discussion. You know the kind. Present your opposition’s case in the most ridiculous, laughable way, then swoop in like a hero to knock them down to size. Be sure to add a few nasty insults disguised as jokes. Appeal to fear. Appeal to a sense of superiority. People eat that stuff up.

It’s fun. Fun to read about all the ways I’m right, right, right. Fun, even, to sneer at the ridiculous claims made by the “other.”

I was prepared to jump right in. As much as I like to think of myself as a moderate, a conciliatory voice in a sea of extremists, this issue hits me right where it hurts.

So I wrote a post. Out of fear, anger, even pain. Lashing out… but, you know, in a funny and readable way. It probably would’ve done well, if I’d gone ahead and published it. I’ve seen a lot like it out there. No doubt read and shared by only those who agree already. And this one pushed all the right buttons. With a so-adorable-you-could-die picture of my cancer-fighting daughter at the end. The KO punch. Take that straw-morons!

Self righteous. Self indulgent. Pointless.

Because most parents don’t lead with their minds, they lead with their hearts. Especially when it comes to the safety of our children. Which is why this vaccine debate can get so very ugly, so very quickly. It taps into our primal defense system.

That doesn’t mean I don’t think I’m right. But I’m going to try to set Mama Bear aside to make my point. This is important. But it’s not personal.

At the core, it is an issue of world-view.

Do you trust the scientific and medical community?

What do you value most highly: personal liberty or communal responsibility?

Ultimately, what do you fear?

To vaccinate or not to vaccinate, it all comes down to fear. Either way, parents take a risk. A risk because vaccinations are neither 100% effective (and wane over time) nor are they 100% safe (not much in this world is). A risk because these diseases might (and in some cases are) making a comeback, putting my child at risk to contract, and spread, a preventable illness.

I’ve been a homeschooling mom, on the granola-crunching, tree-hugging, all-natural west coast. I know many families who choose not to vaccinate. My kids are friends with their kids. In our corner of the world, about 30% of children aren’t fully immunized. These parents are simply behind or doing what they think is best for their children. I know this. I even understand why.

When it came time for us to decide, we put our trust in traditional medicine. Not because I believe in blindly following the dictates of medical professionals like the infallible gods that they are (read this with a great deal of sarcasm), because it makes sense. This is not an unstudied and untested field – the medical evidence is public, accessible and clear. This is not a money-making scheme – vaccinations account for less than 2% of Big Pharma profits. This is not a conspiracy by a powerful elite – these are fellow parents who choose to vaccinate their children also.

Ultimately, I decided to do what I could live with. What if my child became ill, suffered permanent damage, or even died, because I chose to flout convention? What if another child did? I’d heard the stories my Grandpa told of a year spent in an iron lung. Of many who died. Polio. Small pox. Measles. Entries in a text book about deadly epidemics that seem like ancient history to us. Is it right for our family to reap the benefits of progress without doing our part for the future?

But none of that matters now.

You see, I don’t have a choice anymore. My daughter doesn’t anyway. Chemotherapy is stripping her immunity and we are at the mercy of the herd. At a time when every illness looms large and terrifying.

This is fear. Not a remote, theoretical possibility of harm, but one more skirmish in the day-to-day fight to keep death at bay.

So you understand why the question of “preventable diseases” seems SO much more important right now. Our instructions are clear: if she is exposed, even briefly, to one of these illnesses (or to someone who has been) we are to bring her immediately to the hospital. Full on emergency.

Did I mention that my best friend caught Whooping Cough last year? It was brutal. Nothing theoretical about it. And right in our own back yard. My daughter’s already so sick, I don’t know if she could survive that. Did you know that measles kills 400 children per day? North America used to be protected, but it’s back now and it’s a deadly disease. There were over 300 cases of it in our province last year. Did you hear about the NHL mumps outbreak? And on and on and on.

Danger lurks around every corner. Especially for us.

Despite my initial reactions, I’ve always known that those of us who choose not to vaccinate our children are neither monsters nor idiots. Though we’ve come to very different conclusions, we are the same – concerned parents.

Do the risks of immunization outweigh the benefits? Are reports of outbreaks overstated? Are the effects of measles, mumps and whooping cough (among other things) less dire than we’ve been led to believe?

I don’t think so. I really don’t. Since my daughter’s life is at stake I wish I did. I would rest so much easier. For once, I hope I’m wrong.

All I ask, from all my fellow parents, is that these decisions not be made lightly. Do the research. Not just the stuff that’s fun and easy to read, that makes you feel good. Look beyond the condescending attitudes and prejudices on both sides to examine the evidence. Consider the source – is it reputable… qualified… is there accountability… is there an agenda?

Be wise.

Be thorough.

That’s all I can ask.

Because you’re deciding, not just for your own kids, but for all of us who can’t vaccinate. For all the infants, for those with allergies, for those whose vaccinations have worn off or didn’t take, and for those whose immune systems are already damaged.

Be absolutely sure that you are doing the right thing.

She’s counting on you.

img_2008
So here’s me, using the emotionally manipulative picture anyway. Couldn’t resist…


The Year of the Dead Eyed Shuffle

I was in a new year frame of mind last week. I even chose my One Word for the year. My annual weapon against resolutions and inevitable despair. A simple mantra and ongoing prayer all rolled into one.

I didn’t choose the words that first came to mind when I thought of the year to come, the ones that I try not to say in front of children. I may want to cross stitch this on a pillow some day. Though, come to think of it, that would be a kickass cushion.

But I was going for something more cheesy uplifting…

So here it goes:

2015, the year I will learn to “Treasure” what matters most.

Even now. Especially now. In the midst of all the horrible and crazy.

I was: Determined to be fully present, deeply grateful for each special moment and person in my life; Optimistic, filled with purpose, resolving to write/exercise/eat healthy/go to bed early/parent heroically… every single day… without exception; Deluded, convinced that I would, that nothing could hold me back.

The Crappy New Year of Cancer was not going to keep me down!

I am an Overcomer. Lover of Life. Maker of Lists. Unstoppable.

Did I mention deluded?

And so very stoppable.

It’s hard to say what tapped the brakes first. It was the culmination of a hundred little things. The stomach flu. Twisting my ankle. Traffic to and from the hospital every other day. A leaky toilet. Trying to keep a sick, needy boy separate from his immuno-suppressed, equally needy sister. My husband chipping his tooth on a brownie. A nightmare trip to an ill equipped local ER. A hole in my favourite sweater. A broken closet door. Another nasty infection landing B in children’s hospital after only three weeks at home.

Suffice it to say, my new year state of mind didn’t last long. Cue despair. Tears. Who was I kidding?

My prayers often start with one word. “Really. Really?”

This is our life. I can’t wish it, or manage it, or sheer positive will-power it better. I can’t even pray it better. I can’t do anything to change most of what’s coming our way this year.

But I can treasure it. Not in that phoney “let’s-pretend-this-shit-smells-sweet” denial way. In digging out what we can. In the glimpses of beauty, the sudden rush of fierce love and the bizarre epiphanies that only suffering supplies. In the everyday riches and common grace that slips below the radar. In the peach fuzz of a bald head, the passionate absurdity of a tantrum, the predictable rhythm of sibling conflict, even the easy comfort of an equally weary love.

I may not stride purposefully through 2015 as I hoped. I may not skip and dance in triumph. I expect it’ll be more of a zombie-esque lurch. One foot in front of the other. Sometimes I’ll stop dead in my tracks. But even then, through tears and exhaustion I’ll appreciate the smallest momentum all the more.

So here’s us, embracing life in all its magic and misery. What else is there to do?

Linking up to oneword365.com


So Here’s 2014

This year will always be defined by a single event. A single phone call on October 28th. A single word spoken by our family doctor. Leukemia.

It has subsumed almost everything in it’s path. But there was more to our life before. And there is more to our life now. That’s a good thing to remember.

2014 was mostly a good year. And life is more than cancer and chemo and hospital stays. Even there, it trickles into the cracks.

As B smiles and waves and calls out cheerful “hellos” to all the people we pass as the porter pushes her wheelchair to and from the oncology ward – her own personal parade route. As big sisters step into the gaps, mature beyond their years. As friends and strangers shower us with support in the form of food, money, gifts and prayers. As we find humour in the darkest places, like the generic gift assigned to B that just happened to be several bags of hair clips and a giant hair brush – worst. gift. ever. We had to laugh (especially because she loved that stupid brush all the same).

baldisbeautiful

Life is bigger than cancer.

Love. Hope. Faith. God. All bigger than cancer.

That’s what we’re banking on.

So here’s us, as seen through our favourite posts, in 2014…

January

shoes

Putting Myself in Her Shoes

There’s noise buzzing beside my head… loud, annoying. I hold my marker tighter. Lean closer, closer, closer. My nose is filled with the sting of ink.
scratch.
scratch.
scratch…  

February

couch

Once Upon a Marriage

It wasn’t easy, getting married as young as we were. But we were too stupid naïve, too thrilled with our new-found freedom and togetherness to care.

Remember the hideous second-hand couch we were so excited to receive? It was SO uncomfortable! But we threw a green sheet over it and decided we were really grown ups now. At our age uncomfortable seating didn’t seem like such a big deal. Besides, it was just temporary. Eventually life would get easier, better, more secure

Read More.

March

by michael svigel the christian post siftingpoint.com

by michael svigel the christian post
siftingpoint.com

Confession Time

I’ve been cheating.

Unfaithful.

Stepping out.

On my church. With another church…

Read More.

April

house

The Stranger: A short story

The Señor is enthroned in a frayed green armchair on the other side of the room. Straight-backed, legs planted wide, with a cane in his hand like a sceptre, he scowls over the coffee table at me.

“Well… you gonna come in, or what?”

I’ve never encountered a more intimidating stranger…

Read More.

May

life

I Live In Between

Most of my life is spent in a place of too much and not enough.

Too much to do, and not enough time.
Too much stuff, and not enough space.
Too much eaten, and not enough activity.
Too much spent, and not enough saved.
Too much stress, and not enough rest.

You get the picture. You probably live in this picture too. Most of us internet-trawling, Facebook-posting, smart-phone-clutching, Consumers-and-Users do. We don’t want to. We don’t plan to. We read and write and repost all sorts of things to avoid it. But, it’s the curse of modern life

Read More.

June

First steps in the door bringing our new son home forever!

Two Years Ago Today!

Unpacking

The tag on the back says “12 mos” – a measure of size and not age. I shake out the blue and white checked pants before folding them, tangible proof that our almost two-year-old is much smaller than most his age. Tiny shirts, pants, footie pajamas and an impressive array of cute onesies emerge from cloth shopping bags, filling the mostly empty drawers.

I move the size 2 outfits we’d purchased to the closet. The weight and height measurements we had gleaned from medical files did nothing to prepare us for the Lilliputian dimensions of our brand new toddler.

Brand new to us, that is. Up until now he’d been an abstraction, the idea of a son sketched out in black and white via e-mails and social workers’ reports

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July

Yes - those are hockey sticks. How Canadian.

Yes – those are hockey sticks. How Canadian.

Beyond Obligation

He has been contractually obligated to love me for 19 years. And I him.

Half my life. My entire adulthood tied up in another person. And his in me… 

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August

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Raising You is an Art, not a Science

Dear 12-year-old,

Before you, I thought parenting worked like science – laws and equations, inputs and outputs, theories to be proven and disproven with clear, quantifiable results. I may not have used those words. I may not have been aware that I believed this. But my first few years as a mother, and my experience as a daycare teacher, led me to calmly assume that I could manage and mold, if not control, my children.

Your sister, who’s always been predictable, logical and mostly straightforward, strengthened this approach. I had Opinions. I took Positions on the Issues.

Then you came…

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September

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10 Lessons My Daughter is Teaching Me

Ten years seems like a long time. A long time to be alive and learning and growing and discovering new things – and that’s just us. You’ve had a lot going on too!

In the past ten years you’ve brought us to life in a new way and taught us what matters most and nurtured our best selves and made every day an adventure…

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October

cancerbegins

That Terrible Twist that Changes Everything

Two days ago the biggest worries on my mind were: securing funding for speech therapy, my children’s potential texting addictions, and getting my butt out the door for book club.

In the space of a single phone call that all disappeared. In fact, it feels like the ground beneath our feet disappeared too. A cosmic upending. As if some powerful hand has shaken our world like a snow globe.

We are left dizzy, reeling, surveying the damage to our orderly plans and expectations. And terrified…

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November

chemo

A Bad Cancer Day

…although I wax eloquent about sharing the real story in all it’s raw ugliness, I know that most don’t want to hear it. Cute and cuddly tales from the cancer ward are much more palatable – an uplifting message with a smiling picture to boot.

But this is life too. The low points. The bad shit…

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December

The Big “C” Doesn’t Stand for Christmas Around Here

‘Tis the season to put on a happy face, some matchy-matchy outfits and show the world how fabulous it is to be me; surpassed only by the sheer joy that comes from being one of my well-adjusted children.

It’s a festive filter. Not lies so much as a iron-willed determination to focus on all the happy, and only the happy. Absolutely nothing wrong with that. I’ve often looked at a carefully staged family photo and been encouraged. Because we are those people, the best and the brightest parts of our lives.

But we’re also the dark and the ugly… 

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So here’s us, in 2014.

maya3


The ‘Big C’ Doesn’t Stand for Christmas Around Here

It’s past time for an update from me.

Long past time. Those Facebook ‘year-in-review’ cards are taunting me. Also, the mailbox full of Christmas letters, which is something we’ve always spent way too much time and energy on in the past (we are a ‘family of writers’ after all). ‘Tis the season to put on a happy face, some matchy-matchy outfits and show the world how fabulous it is to be me; surpassed only by the sheer joy that comes from being one of my well-adjusted children.

It’s a festive filter. Not lies so much as a iron-willed determination to focus on all the happy, and only the happy. Absolutely nothing wrong with that. I’ve often looked at a carefully staged family photo and been encouraged. Because we are those people, the best and the brightest parts of our lives.

But we’re also the dark and the ugly. The bickering and the yelling and the gritted teeth between flashes, the self-obsession, the focus on blemishes and fat and who-done-me-wrong, the jealousy and dissatisfaction and greed. Also, the heartbreak and grief and utter confusion, the disabilities and disappointments, the pain and suffering and dark nights of the soul.

No one wants that stuff on the record.

Which brings me to my lack of updates. I’m not sure where to start. I’m not sure what can be put into words.

Since our daughter’s diagnosis we were assured that we had the best possible prognosis (90% cure rate), a fact I didn’t realize I was banking on, until we got the news that she has an unusual mutated form of leukemia. The new number, 65%, is not nearly so bankable. Better than some, and ultimately, just a number… but it was a blow.

She responded well to treatment, although she did develop diabetes due to the meds. Shortly after our not so great news, it became apparent that she had picked up an infection from her latest bone marrow biopsy – skin, blood and, likely, bone infections, actually. Layered on top of that, a UTI and kidney troubles. A week later, a highly contagious, and frankly nasty infection called c-diff landed us in isolation. Add just a dash of liver function decline to keep it interesting.

Suffice it to say, we didn’t leave the hospital after the first month as planned. We ended up staying almost 8 weeks.

On Saturday night, we brought her home!

That’s the upside. The happy holiday snapshot that makes everyone smile. It is SO good to be home! We go back to the hospital every other day, but even that feels like a relief, because her immune system is non-existent right now, her meds are complicated and we are nervous wrecks – we’re happy to get her checked out, just to make sure. These people are on top of it, and they don’t mess around.

The other upside continues to be the support and love of everyone around us. We’re overwhelmed with gifts and food and encouragement from all kinds of people – ‘cancer swag’ is the real deal. Something about this kind of struggle taps into the kindness of all humanity.

Bureaucracy, not so much. But that’s a dark side story.

There’s a lot of dark side too. A lot of moments that don’t make the Facebook feed. We are living every parent’s worst nightmare, and there are very few moments that I’m not aware of that.

We’ve got our game face on most of the time. That’s what parents do. Get through. Research. Dole out comfort/attention/discipline as needed. Wrap up presents. Cry in the shower. Turn on the Christmas lights. Check to make sure she’s breathing.

I’m good at being a mom.

I’m just not so good at being a person right now.

I can’t read anymore, I don’t have the attention span. I spend a lot of time on Facebook instead. The stupid quizzes, celebrity news, whimsical quotes – that’s the depth I can handle. I’m forgetful and touchy and easily overwhelmed. I eat junk food, even when it turns my stomach. I don’t even make plans to exercise. Mostly, I’m angry. Not like usual, where I fuss and rant then feel instantly better. This is a low-level simmering that is far more toxic. So much around me seems pointless. And I am running out of polite.

For instance, the service industry: full of seemingly cheerful people who are paid to make inane small talk with strangers, has become a perpetual irritation to me. I used to be a cashier. It’s the job. Especially at this time of year. I get it. But it still makes my skin crawl. I’ve encountered several versions of: “What fun plans do you have this year?” and, “So, how are you getting into the spirit of the season?” and even, “You look sad, cheer up, we’re celebrating the Saviour’s birth – Christmas is the most wonderful time of year!”

I’ve started giving them an honest answer. Strangely, it doesn’t seem to be what they want to hear. My reality rudely interrupts their peace on earth.

I secretly enjoy their horrified looks. So sick of this pressure to be happy, happy, happy…

bah. humbug.

So here’s us, with the least inspiring Christmas update you’ve ever read. Have yourself whatever kind of holiday you need to have. Life is about more than just the merry. And that’s okay too.


A Bad Cancer Day

I debated whether or not I should post this… Maybe just on Facebook. Maybe not at all. In the end, I decided not to.

I wrote it on day 3. And although I wax eloquent about sharing the real story in all it’s raw ugliness, I know that most don’t want to hear it. Cute and cuddly tales from the cancer ward are much more palatable – an uplifting message with a smiling picture to boot.

But this is life too. The low points. The bad shit.

We’re 3 weeks in now, and feel decades older and wiser and more exhausted. I had another rough night, one that I’m not at all ready to write about. So instead I’ll share this. And it feels like a relief to put it out there.

If you know and love my daughter, you may want to scroll past these ones. I’ll post something cute another day. There’s still plenty of cute.

* * *

It’s my first free moment in five hours. I might have taken 2 minutes to eat an ice cream cup for dinner. An ice cream cup I stole from the fridge full of patient snacks. That’s right, I steal from sick kids these days. Those IV poles slow them right down; I’m pretty sure I could take them.

Did I mention my inappropriate humour is on overdrive these days? I’m pretty sure there’s a psychological explanation to explain away anything I do and say right now. Carte blanche.

This afternoon, as I comforted my moaning and uncomfortable child, I assured her visiting uncle that a person can get used to anything. That even as her unhappiness caused him distress, I was taking it calmly in stride. Not because I’m a monster, but because I was getting used to being cancer-parent. Day 3 since diagnosis, and already a pro.

I’m just a fast study, I thought smugly. I got this.

Except for the part where I didn’t. And I don’t. At all. I don’t have any control here. I can’t fix this and even my best efforts are like fighting a forest fire with squirt gun. Useless. Helpless.

I’m relying on the professionals. And they really seem to know what they’re doing. And they really seem to care. But even with all their training and all their equipment and all their impressively long words, sometimes the fire wins.

Tonight discomfort turned to pain. My daughter screamed and cried and begged me to make it better.

I could only pretend to be calm. For her sake.

She may have an infection. Probably. Maybe. Or probably not. The story changes with everyone we talk to. While there are plenty of “infection fighting cells” in her blood (neutrophils) they aren’t doing their job that well. They only look the part. We’ve changed to a stronger antibiotic which we hope will kill that infection dead. If it is even the infection causing her escalating fever. It might just be the cancer. Maybe. Probably. There aren’t really many answers.

And the nasty leukaemia cells (blasts) are filling the marrow of her bones. Which makes them hurt. Her bones hurt. Not the achy, “maybe it’s gonna rain” kind of pain I’d imagined when I read this in a list of symptoms, but something much much worse.

And she had a small surgery to implant a tube into her, near her heart, which is a Very Good Thing in the long run – easy, painless blood samples, IV fluids and meds. But that means post anaesthesia nausea, soreness and a strange piece of hardware sticking out of her chest. Despite my “cyborgs are cool” pep talk, this is a horrifying thing to her.

As I lay down on the very edge of her bed trying to massage peace and calm into her body while she cried pitifully, I could only think: This is just the beginning.

I have to explain that, no, we aren’t going home anytime soon; and that she can’t take the tube out; and that even though she’s fallen in love with her nurse there’s a shift change right around the corner.

But her pain is the worst.

I have never prayed with such desperation. I don’t know that I was using words, but the meaning was resoundingly clear. They say there’s no atheists in foxholes. I don’t know about that. But I’m positive that even the most skeptical soul will be begging someone, or something for mercy, when their baby is in agony. It is a profoundly horrific experience. I would gladly, gleefully, gratefully suffer in her place if I could.

B is finally asleep, drugged into peace. Thank you morphine.

The moral of the story is… there is no moral that makes a story like this worth the telling. It’s just to be survived. Please God.

So here’s me, at a low point. Cancer is evil. I hate it more than words can express.


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