Tag Archives: cancer

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.

 

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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.

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


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.


These Are the Days of our Lives: Hospital Style

I’ve been sick. A raging cold – sore throat, cough, headache, ache-y bones and general whininess. Not a big deal. Except when your baby happens to be in hospital undergoing chemotherapy.

Then it’s a huge deal.

But my body decided I needed to be sidelined. Daddy and Grandparents stepped up. I should be grateful. I am grateful. But it was also miserable not being there when she wanted Mama and I had to sing lullabies over the phone.

Last night I was finally back where I belong! Where I most, and least, want to be: in the oncology ward of children’s hospital. Just in time for another emotional roller coaster ride. Cause that’s how it goes these days.

Any illusions I had about long stretches of boredom during this experience have long since been obliterated. We have very little uninterrupted time in the day. Or the night. There are more people and procedures and poking and prodding than anyone should have to endure.

But this latest ride had an upswing. At least, as far as my daughter was concerned.

B has developed steroid-induced diabetes because of the meds she’s on. This has ushered us in to the wonderful world of glucose monitors and sub-cutaneous insulin injections, which isn’t as fun as it sounds (and it sounds horrible). After many days of screaming fits, freezing spray and restraining hugs, she decided it wasn’t that bad, and now merely complains and insists on choosing the exact spot for her needles.

Her blood sugars have been quite high. Consistently too high at night. As frustratingly unpredictable as her appetite. Revealing quickly to all involved that you can’t force my girl to do anything, least of all, eat.

While waiting for her bone marrow biopsy results they’ve put a pause on chemo, including steroids. Those results will determine the next step, so we might as well wait. Just one day, perfectly logical, why not.

Since her blood sugars have been extremely high this past weekend they’ve been treating it more proactively (read: more insulin). What they didn’t anticipate was her extremely quick recovery to normal blood sugar regulation. That, plus an even smaller appetite (without raging steroid hunger in the mix).

I stood my ground on the fast acting insulin. With her blood sugar already low and refusal to eat more than a few bites of dinner, it just didn’t make sense. I’m learning to stand behind my instincts as a mother. Even with professionals in the mix. The nurse herself seemed hesitant, so that sealed the deal. “Blame me” I told her, as she paged the endocrinologist again. “Tell them I won’t allow it.”

I should have questioned more. Or maybe it’s just one of those things. Her blood sugars have spiked overnight more than once, so a slow acting 12-hour insulin didn’t seem like a bad idea.

It was.

Thankfully they are monitoring her closely. I’m so grateful that they repeatedly stab her with needles while she sleeps – how bizarre is that sentiment? Her alarmed nurse woke her up to drink a large glass of juice and eat a snack. It took cajoling, but she is a fan of her new nurse (a man – which she finds fascinating) so she came around.

After the next poke, 15 minutes later, she was woken again with more urgency. We were relieved she was still responsive.

He came back to the room dumping handfuls of Halloween candy on her lap. I’m sure she heard the angels sing. After a week on a strict diabetic diet this midnight candy feast was like a dream come true!

She sat up in bed, cramming chocolate and gummies in her mouth as fast as she could, a huge grin on her face and a suspicious look in her eye.

Brent is now her favourite nurse. Ever.

I didn’t find this quite as fun as she did.

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So here’s us, living up to our unofficial family mission statement: Never a Dull Moment.


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