Meaning

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Lately, a few friends of mine have mentioned that they are feeling down. Life sometimes takes a strange, unexpected turn, and you are thrown off balance, wondering what you did to deserve this.

It doesn’t help that it’s grey and raining out, every day for the last week has been hidden from the sun. All of us are just walking around in the pale grey light like ghosts floating amidst shadows, everything around us is coated in milky cloudy colors.

Days like these blend into each other, if someone asks you later what you did last Tuesday you can’t remember the difference between Tuesday and Wednesday. Maybe there was none.

Do you ever look back at how you were as a teenager, and wish you could warn that person? Or at least, give her a hint? I do. I sometimes think about her and feel like…she has no idea yet! She still thinks she’s going to meet the love of her life next year, get married in a castle and have several perfect kids, have a meaningful career that makes a difference, have a close circle of friends that are funny and cool (probably called Phoebe, Monica and Rachel, or something like that) and live an exciting life of adventure and meaning, leaving a mark on the world when she finally passes away at an old age, her many admirers gathering to have a huge party celebrating her life.

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She has no idea yet… 🙂

Where and when did that plan start to derail? Was it a slow process, a gradual silent shifting of gears, or a sudden, quick flash of lightning in her face, blinding her with its bright white light, leaving her forced to feel her way with her hands outstretched, guessing at where she was going?

And most importantly, was it meant to be like this?

I found a photo of Elliot recently. It was taken while on holiday in Denmark, about 6 weeks before his diagnosis. He is standing on the beach, his feet under water, a huge smile on his face. We had taken off his wet clothing, so he’s just in his little underwear, no shame of course at age 4, his arms held high as he waves at the sun.

If I look really closely at the photo, I can see the bump on the lower right side of his abdomen. The bump that turned out to be a tumour. The tumour that was cancerous. The cancer that spread to his lungs, making it stage 4.

What if I had noticed it back then? Would six weeks have meant it would not have metastasized yet? Would it have made a difference? But no, there’s no turning back time, I can’t go back and spot the bump earlier.

But what if I hadn’t found it when I did? What if I hadn’t noticed even 6 weeks later?

These questions could haunt me. But strangely enough, I don’t bother with them much. I know it serves no purpose to analyze all the “ what ifs”.

But I do wonder about whether or not this path in our life was meant to be, or whether we have any control over our destinies.

I like to think I have some control. Oh who am I kidding, I’m a total control freak. I secretly semi-consciously believe I am the best at everything important. (Note to the critics: putting gas in the car is not on my “important” list).

So it’s hard to let go, and accept that not everything is within my control…

I suppose that makes me Monica. Hey, which one of my friends right now is SURE she’s Rachel??image

So at times like these when some of my friends are feeling a bit down, I feel I should be able to “fix it”. Monica can do anything! She can clean the apartment and bake twelve lasagnas and analyze her friend’s love life and drink coffee and look fabulous all at the same time.  And she’s only mildly annoying as she’s doing it all. So why can’t I fix all the world’s problems, or at least all my friends’?

Well, I guess maybe, just maybe, I have to admit… some problems are actually out of my control… For one thing, I can’t stop the rain. Hey that should be a song.

And what about all my other dreams? I did meet Prince Charming eventually; it just took me a few decades longer than expected.  We got married at the city hall… a building potentially old enough to qualify as a castle in my books… My kids are truly perfect (ok maybe it would be nice if I didn’t cringe every time I had to enter their bathroom…) My life is certainly exciting and meaningful,  although most cancermoms would agree with me that a little less excitement could be nice…Hmmmm. Am I actually the victim of my own wishes? Isn’t there an old Chinese proverb that says “be careful what you wish for, it might come true?”

Is my life a milder version of that old suspense story by W.W. Jacobs, The Monkey’s Paw, where  a person’s wishes are granted, but with unexpected consequences? Is life just a series of random acts, or does everything you do and think affect something else?

What’s that thing about the butterfly making enough wind with its wings to cause a cyclone in another part of the world?

A friend’s daughter recently just finished her treatment for leukemia.  For those not in the cancer world, or at least not the leukemia world, treatment for the most common leukemia (ALL) takes roughly two and half years for a girl (longer for boys).  This is a huge part of your life, not to mention your child’s life! In fact, my friend’s daughter has spent more time in treatment than not. To say that this was a difficult time is not even close to being able to describe what leukemia parents and kids go through.  I thought that the 10 months of Elliot’s treatment was interminable, imagine years.  And because of the long treatment cycle, immunity is often low for long periods of time, so the kids are often restricted in what activities they can participate in.  Many miss out on school, friends, parties, outdoor activities, events, in fact, anywhere there might be a risk of catching something… The family lives in a bubble, in an “alternate reality”.

And that’s when things go well.

Often, despite all these precautions, a leukemia kid will still catch some virus, bacteria or fungus. You know, there are fungi called aspergillosis, I looked this up because I was curious what the risk was to Elliot when he was in treatment… They just float around in the air, everywhere. You can’t escape it, only normal people living outside of the alternate reality of cancer, have immune systems that just deal with those little buggers and destroy them right away.  But for leukemia kids, these little beings are just waiting for their chance… In fact, one of the leading causes of serious infection during treatment is called “opportunistic infection”, it means there are creatures out there in the world, little germs, just hovering in the air waiting for an opportunity…

Sigh.

But wait! She made it through the treatment. She made it through a variety of infections and reactions and long term hospitalizations, and the treatment and side effects and got to the last day of chemo. (Actually, she jump-started the last day of chemo by cleverly getting  so sick from one of the heavier treatments a couple weeks before the end of chemo date, so that they finally decided to just not even give her that last pill. Clever girl.)

And the parents breathed a huge sigh of relief!! And the family and friends and everyone who had followed her story cheered! They signed her up for school, to start the day after the Easter holidays. Hurray!! Life would get back to “normal” after years, they would be allowed to leave the alternate reality!

Then the family went skiing…

Is it irony? Is it almost tragi-comedy? Is it enough to make you scream out loud?

She broke her leg skiing. Three days before starting school.

The type of thing that when you hear about it, you literally don’t know if you should laugh or cry. Maybe you should do both.

On the one hand, how incredibly  incredibly frustrating to go through all that  treatment and just before normal life starts you are back in the hospital world.

On the other hand, how normal… How incredibly nice and normal to be at the hospital with a kid who broke her leg skiing… That’s a “normal kid” problem!! People outside the cancer world can maybe not quite understand this but… She was skiing!!!!! The little girl who just a few months ago was battling a fungi attack in her lungs! The little girl who probably knows various chemo regimens by name, who can most likely tell you the exact dose of methotrexate it would take to make her puke!

When I got the news I felt just awful for my friend, who once again had to rush to the hospital with a hurt child. My friend who felt guilt, because moms always feel guilt even if it’s not our fault, because somehow we think we should be able to prevent any bad thing from happening, especially to a child who has endured more than her fair share of bad things.

But at the same time, I also felt a strange feeling of gratitude and pride. Because she was skiing. She was being normal.

And after all, isn’t that what we want most for our child? To be able to live life to the fullest, take risks, fall and get back up again (with a cast maybe), be happy?

Maybe that is all the meaning we need.

 

Fun and productive things to do while waiting in the hospital.

I have a friend right now who is at her son’s bedside in the hospital, an unplanned vacation from the real world which happens so frequently in the life of a cancer mom (or cancer dad of course). It made me think about all the long hours, days and nights we spent in the hospital with Elliot, waiting, pacing up and down the halls, sitting by the bed, waiting, going down to the coffee shop to get coffee to bring back up, waiting, chatting with other parents or nurses, waiting, trying to get our child to cooperate with the nurse or doctor, eating cold meals or warmish sandwiches, waiting, holding our child down while the nurse or doctor does whatever it is they need to do, waiting, texting friends or anyone who might possibly be awake at 3am, and of course, waiting.

And so, I have come up with a creative list of fun things to do while waiting in the hospital. As I’m sure many of my other cancer mom friends (and cancer dads!!) will have suggestions, please feel free to comment at the end.

Good times…

 

  1. Wait. (Just in case you hadn’t thought of that)
  2. Read the same paragraph in your book over and over since you will be interrupted by your child, the nurse, a clown, the doctor or some other important person roughly every 6 minutes.
  3. Polish your finger and toe nails. Since you will not have any nailpolish, use a q tip and some of the yellow iodine tincture. It will look unique and clever.
  4. Make beautiful water fountain statue out of syringes, I.V. tubes, and bedpans.
  5. Take a plastic cup and write “Urine Sample” on it. Then pour some apple juice in it and secretly place it on the nurses’ desk.  Hours of entertainment while you watch them try to figure it out.
  6. Place a bunch of pillows on a wheel chair in the shape of a person, then cover with a blanket.  Leave a little note pinned to the blanket saying “do not wake!” Then put the wheelchair in the elevator. Bet with the other moms and dads how long it will take till someone does something.
  7. Steal as many toothpicks from the cafeteria as possible and build a smaller scale version of the Eiffel Tower. Place it in the hospital lobby and watch as people admire your artwork.
  8. Start rumours about the hospital personnel. Make them as unlikely as possible, and tell only one person. Then see how many hours it takes till you hear the rumour again from someone else, and how much the rumour has changed from your original version.
  9. Pretend you are an interior designer with unlimited budget, and plan what changes you would make to the department you’re in.
  10. Write a letter to your health minister outlining the improvements you feel are necessary in the lives of hospital patients and families. Since you will probably not have thought to bring paper and pens, use toilet paper to write on and a syringe filled tomato soup as your pen.
  11. When the head doctor comes in with some students, quickly give your child a metal bedpan and some spoons. Secretly tell your kid the doctors enjoy drum concerts while they talk.
  12. If your child is going to receive dexamethasone or other steroids, just before the treatment make sure to watch the movie “The Exorcist” especially the scene where the girl’s head spins around. You will be better prepared although you may look back on the movie with thoughts that the girl was in fact quite cute and innocent looking in that scene, compared to your own kid now…
  13. If there is a suggestion box in the hospital cafeteria, write “cocktail hour” on several notes to fill it.
  14. If you have been awake for more than 36 hours and your child is so bored he is driving you crazy, it is official hospital policy that you can push the nurses’ call-button as many times as you want, even if you can’t remember what you needed by the time she gets there.
  15. Since your child is not in school you need to supplement his education. One science project is to use several sugar packets from the cafeteria and mix them with whatever liquids are on the meal tray until they form a paste. Then, your child can wash the windows using that, and see which combinations clean best. It’s all in the interest of education so it’s ok.
  16. Fill several hospital gloves with water and start a water balloon fight with the other kids. The nurses LOVE this.
  17. If the doctor or nurse comes while your child is in the bathroom, look all surprised and say “Oh I thought he was with YOU!”
  18. Make a list of all the things you will do when this phase of your life is over. It doesn’t matter how crazy or unlikely they are, just write them down. There is a life after this, and you have the right to dream big.

Comedy in Tragedy

Don't know who this guy is...

One of the ways in which real life is so completely different from any fiction you might see in a movie or on tv is the fact that even in the midst of tragedy, there are funny moments.  These you don’t see on tv.  Can you imagine Kate Winslet hanging off the bow of the Titanic, arms thrown out to her side, eyes closed as she breathes in the fresh, dark night… and then a seagull poops on her shoulder? Ok I know, there wouldn’t likely be seagulls out in the north Atlantic on a cold night, but if there was… it would be kind of funny, right?

Well the reality is that these funny, bizarre moments do happen, even in the midst of the darkest moments. Sometimes, you are in too much pain to notice them. But other times, it is the very emotional vulnerability you are feeling that opens you up to the hilarity of the moment.

On the night Martin and I received the official diagnosis about Elliot, we cried and hugged outside of his hospital room before going in. We didn’t want him to see us so extremely upset. Then we took a deep breath together, and entered the room.

We sat next to his bed and did “normal” parenting things, helped him into his pyjamas, brushed his teeth, read him each a bedtime story.

Then we sat facing each other, whispering, surrounded loosely by the pale pink and pale blue curtains that hung tightly around our chairs and his bed, and Elliot fell asleep. We talked over how the next few days would go. Suddenly our plans had completely changed. Everything and anything that we thought had been important was suddenly re-evaluated. We made some decisions. Trips would be cancelled.  Our shifts at work would have to be changed. We can get thought this! We whispered bravely. Oh, let’s not forget that appointment we had next Tuesday, call and postpone that. And the night out with friends on Saturday, just send a text cancelling. What else… We sat in the darkness facing each other, whispering, holding hands. The red lights of the monitors providing the only break in the blackness around us. The teenager in the bed next to Elliot’s coughed, a loud rusty noise in the quiet of the room. “ Oh”, whispered Martin,  “And the other two, we can’t forget the other two. They will need us to get through this. We have to be strong for them, and not let them feel abandoned.” I felt my throat getting tight, hearing him speak so thoughtfully and paternally about my two older boys, only a few hours after hearing of his only child’s critical illness.

“Yes,” I say, “We’ll just have to keep right on being good parents to all three of them. It would be too easy to start being overly indulgent of Elliot and forget their needs too.”

Thinking of something else, I add: “And also, we really have to not become too overprotective.”

Martin nods slowly. His ears heard: “And also, we really have to not become too over productive.”

He quietly says: “Um, in which way?”

I say: “Well, you know, it would be natural to want to just keep him safe at home from now on during the treatment…”

He says: “I don’t think that’s a good idea, really…”

Me: “No, exactly! We still want him to be able to go out and have fun with life! Right???”

Martin: “Ok, but you want us to relax more? Work less? Just stay home and have down time?”

Me, starting to feel a bit annoyed: “Well I think we’ll get bored if we’re home all the time! And then I’ll just worry more if I don’t have anything to do!”

Martin: “Ok Ok I agree, we’ll just be really careful and keep him home a lot, and not do too many activities or take on too much!”

Me: “But I don’t want to just keep him home all the time! I want him to do some of the same activities he was doing before!”

Him, whispering quite loudly: “He can still do some of the same activities and it doesn’t mean we’ll be spending all our time running around from work to home to activities, we’ll still be able to manage! Don’t worry!!” he is starting to look exasperated. “We’ll never have time to be over productive!!”

I stare at him for a while. My tired brain goes into slow rewind, and replay of our conversation.

“Martin” I whisper, leaning forward toward him. He leans closer.

“I said overprotective, not over productive”.

“ohhhhhhhhhhhhhhhhh…”

And we giggle. A bit more. A chuckle. A stifled laugh. Louder, then we just basically start laughing, both of us sitting there shaking in our little curtain tent, laughing out loud with tears rolling down our faces, Elliot sleeping like any 4 year old does regardless of noise, the other older boy sleeping and snortling in his bed like any leukemia patient loaded up on morphine sleeps through noise…

Laughter in the face of tragedy. A strange partnership. But oh so real.

With my mom’s diagnosis, we had many moments like that. I remember after her first operation, she was hooked up to one of those machines that monitor the i.v., and beeps when it gets low. It also beeps after a few minutes if you unplug it, because the battery life is quite short. And, as any patient or caregiver reading this will also tell you, it also beeps at random sometimes just to annoy you.  These machines have a mind of their own and need attention.

So my sister Michelle and I are on the evening “shift “at the hospital, watching over our mom who had fallen asleep after telling us to stop giggling. It’s like being a kid again, in the back seat of the car as our mom tries desperately to drive us to school on time after we’ve missed the bus, and now are stuck in traffic, and we’re giggling. Only now that I have my own three kids can I relate to how the giggling is just making the situation worse. But I digress.

Michelle and I were giggling because we are slowly being driven mad by the unpredictable beeping of the i.v. machine. It had been beeping non-stop for 30 minutes, but the nurses were just switching shifts, the day nurse leaving and the evening one having just arrived for the night. It’s dark out, our dad has brought Julie (youngest sister) home for supper.

And the machine won’t stop beeping.

Michelle ventures out into the hall, finds the nurse, and tells her that, well, the machine that beeps, is well, beeping. Our medical lingo was not as good then, we actually referred to it as the beep-beep machine. The nurse exasperatingly says she’ll be there when she has time, and that they are quite short staffed tonight.

Sidebar here, as I mention that nurses just don’t get paid enough for all the work they do, they are truly the unsung heroes of the medical profession. I could go on about this for a whole other blog… Maybe I will at a later date. But the fact it that they work hard and are often overworked and overtired. It is not surprising that they can sometimes lose patience. And yet, I have rarely seen them be anything less than professional.

In any case, we wait another 20 minutes, surrounded by beeps and an increasingly frustrated mother, who is being woken up by the noise. Both Michelle and I make attempts at reading all the labels on the machine, trying to figure it out without touching it. We check the cables, but they all seem ok (in our expert opinion).

We peek out into the darkened hall again. No nurse.

Finally, I press one of the buttons on the machine. It still beeps. Michelle presses another. The beeping stops, then starts three seconds later. So we both just start randomly pressing all the buttons.

The nurse comes in.

Caught with your hands in the cookie jar.

We leap away from the machine.

The nurse grumpily quickly pushes some of the buttons until the machine stops beeping. Since she’s there, she also checks our mom, does a few nurse- type things while Michelle and I hover in the background like school kids. Just as she is about to leave the machine beeps again, like it’s saying goodbye. The nurse sighs, turns around, stares at it angrily with her hands on her hips, then says it must be the battery alarm that’s malfunctioning, and she’ll get a new machine when she has the chance but right now she has to do the rounds. And she leaves.

Beep.

Michelle and I look at each other. Our mom has actually fallen asleep now, and we consider whether we should just go home.

Beep.

Or, maybe we should look for a new machine? The nurse won’t have time for hours…

Beep.

Maybe we could just kind of go for a little walk through the quiet dark hospital, and if we happened to see a loose beep-beep machine, commandeer it?

Beep.

We head out.

And this is how Michelle and I happened to find ourselves wandering the dark hallways of the hospital late one evening, peeking into empty bedrooms, avoiding any people who looked official (by the way, anyone walking around a hospital late at night looks official).

Our plan was to get a beep-beep machine, roll it back to our mom’s room (somehow carrying it up or down staircases since we were avoiding the more populated elevators), and triumphantly show it to the nurse who would gratefully hook it up to our mom, thus making us the heroes of the Quiet Night’s Sleep.

At one point it did occur to us that we might get caught, arrested, and thrown in jail on suspicion of medical equipment theft. This made us laugh quite a bit.

So we were actually wandering around the dark, quiet hallways of a hospital late at night, laughing our heads off, and looking to steal a beep-beep machine.

I won’t tell you how the story ends, but let’s just say I have no criminal record. The photo here is Michelle and I, looking very innocent. Never mind that the actual events I’ve described take place roughly 20 years after this photo was taken.

We always look this innocent...

I wonder now if our mom appreciates all the hard work we did for her. I somehow suspect she would rather not know about it…

Funny.

And tragic.

Can you relate?

A Day on the Chemo Ward, fourth and final part

 

So I’m sitting here in the chemo ward and starting to feel slightly depressed at the memory of the night Dr. Latour and Dr. Nelson gave us The Diagnosis. There doesn’t seem to be any new kid coming, and I can’t just sit here for the next three hours remaining of toxic chemicals being administered to my perfect little boy feeling down. I look at Martin, and he wisely feels my stare and looks up from his phone.

He smiles. I ask what he’s reading about on his phone. He excitedly starts to explain to me all about a new gadget that is coming on the market soon (possibly a mobile phone, but because he doesn’t use that expression for it and instead says the Android 4 point something I am left to wing it) and how it will be in Europe soon but the problem is they are already working on the next version so he is not sure if he should buy this one or wait for the next one. I’m smiling and nodding and trying to make appropriate comments. It’s a bit like our conversations about wine. He is European and has clearly not really noticed that I’m Canadian. You could give me some cough syrup and tell me it’s a vintage 1995 and I’d drink it. If it’s not beer, our whole country is just faking it. He actually knows a lot about wine, and in true Scandinavian form, he is willing to pay a lot for the good stuff. In true Canadian form I have trouble paying more than 50 dollars for anything that doesn’t come with an engine.

People have asked us how we are holding up, how our relationship is doing.   This type of crisis could easily cause a marriage to rupture at the seams, crack under all this pressure.

It’s strange though… This whole thing has actually made us stronger. I would have rated our relationship pretty high on the “gonna work” scale, (as opposed to the “doomed to self-destruct scale.) In any case, I think we have reached a new level in our marriage. We were lucky to already really happen to like each other basically just as we were. It’s actually possible that Martin sees right through my Canadian wine-and techno fake act, but keeps right on talking because he thinks I’ll see the light if he just keeps explaining the advantages of the Google Android line of product over the Apple religion…It’s true that when I start to ramble about literature or parenting or schooling he listens as if he actually shares my passion. So maybe he’s faking it a bit too.

In any case, my point is, we have actually gotten closer. So that is one to put on the list of Cancer Pros. We already know what’s on the Cancer Cons list, so there’s no point even writing it. The Pros list is much more interesting, and challenging to come up with. Like, for example, the shampoo savings! The close friendship I have developed with my pharmacist! The medical lingo I have acquired! The vomit stain removal expertise skills! The fact that little things don’t stress me anymore! The shared battle against this cancer I am fighting with my husband… no exclamation point.

He does amaze me. Like Elliot, he has shown a strength I can only admire. I know why he is talking about the phone now (it could actually be a tablet, now that I listen a bit more carefully). It isn’t because he is unaffected by where we are and what is happening. It’s because these things make him happy, and he needs to cling to anything that brings him close to feeling happy, even close to feeling ok. So I am thrilled to hear about the gadget thingy, and I wish I could just go out and buy it for him myself. That, by the way, would be counter productive, as apparently the search for the exact right gadget is part of the thrill, so if I bought it that would ruin the chase. Good thing he’s not a womanizer, or I might be in trouble. I don’t mind competing against Androids. Oh that totally came out sounding the wrong way.  Is it ok to giggle to yourself while you sit in the chemo ward with your child getting his dose? What are the odds someone will notice and think I’ve lost it? Ok here’s the real question, what are the odds I have?

Martin decides to go down to the coffee shop and get us some more coffee.  I ended up reading a book and playing a puzzle with Elliot after all (turns out I am actually competitive).  And now Elliot is back to watching a movie on the Ipad again. The Rude Mom’s daughter has fallen asleep, the mom is staring out the window. I consider talking to her, but I think she needs time. Talking to me would make her feel too much. Looking at Elliot would make her think about her daughter’s imminent hair loss. She is not ready to be part of the Cancer Moms social club yet. She stills holds onto that normalcy myth, and isn’t quite stepping into our world yet. Some people would call it denial. It’s really actually just part of acceptance.

The Smily Girl and her mom are getting ready to leave. Smily Girl has been in treatment since last summer, and “only” has another year or so to go.  The nurse comes in to remove the chemo needle. These are the bad times. The needle is sticking out of the port-a-cath, which is a small box inserted under the skin on the upper right chest. The port-a-cath is connected to a vein, so that the chemo can be administered easily. Most children receiving chemo have a port-a-cath, which is installed surgically before the treatment starts. It spares them the need to have an i.v. inserted in the fragile veins of the  arm or hand every time. Ah, the miracles of modern medicine. Before this, many cancer patients suffered terribly from the damage the chemo would do to their veins, or even, worse, from the chemo medicine spilling out onto their skin, and destroying large patches of it within seconds. The only thing is, a needle needs to be popped into the port-a-cath for each treatment, and removed after.

Apparently it doesn’t hurt much. The kids beg to differ. They all, universally, freak out when it’s time to insert or remove the needle.  So the nurse comes in, goes to their bed and cheerfully says it’s time to remove the needle, the chemo is done. Smily Girl freaks out. The nurse tries to reason with her. The mom tries to calm her. The tray of bandages and syringes the nurse was carrying almost goes flying, but she catches it in time and places it on the table. These nurses are pros. She never loses her smile. The mom holds her daughter’s legs and the nurse holds her arms with one hand, then somehow yanks the needle out with the other. Smily Girl’s screams reduce to a whimper. Mom releases legs. Nurse continues to smile and says something about how brave Smily Girl was, while quickly applying antiseptic and a bandage. The bad moment is over. The mom and I happen to exchange glances, and we start laughing, then nervously stop, feeling the inappropriateness. Smily Girl says she wants ice cream as soon as she gets home. Mom agrees breathlessly, running her hand over her daughter’ thin wisps of hair.

Parenting when your child has cancer is a whole new ballgame. All the rules are out the window. Forget all the ideas you had about chores, food, television watching, video games, bedtime, sleeping in their own bed, buying toys for no reason… It’s a free for all.  I’m not sure how we are ever going to get back to any kind of normal discipline or rules at our place.

For example, Elliot frequently eats while watching TV. That’s because they told us at the beginning to let him eat whatever he wants, whenever he wants, however he wants. They said he may have no appetite, may be tired a lot, may need special treatment…

Elliot heard all this, arrived home after the first week in the hospital, declared himself King and has been ruling with an iron fist ever since. It’s actually quite lucky that we never had junk food at home, so he doesn’t know about it,  because he basically eats whatever he wants, whenever he wants, however he wants… Non stop! I almost feel like putting in a complaint with the hospital, they told us his appetite would be reduced, and he’s still eating us out of house and home, just like the other two, who grumpily are not allowed to have breakfast while watching a movie. Of course, there are also those times when he just lies on the couch refusing most food, so we feel he is entitled to some freedom of choice the rest of the time.

The chemo is done soon for us too. We get home late that day. As we pull off the highway at our exit Elliot looks outside and says in a surprised, innocent voice “Hey, I didn’t even get sick this time!”.  Martin and I are exhausted. Elliot decides to ride his bike from the car to the front door because his feet are “too tired to walk”. Once inside, he announces he will watch two tv shows and then play with his lego, and he would like a sandwich while watching tv please. Martin makes a b-line for the coffee machine and I get busy with the peanut butter and jam.

And so goes another day as a Cancer Mom. Is it really that bad? Yes and no. Yes, much more, and no, not as much as you think. This answer has become standard for me, but it actually can be applied to almost any major life question, especially when asked by a person who has no idea yet…

“Is childbirth really that hard and painful?”

“Is having a baby really that life-affirming and deeply meaningful?”

“Is parenting really so incredibly exhausting?”

“Is marriage really so easy when you meet the right person?”

“Are teenagers really that frustrating?”

“Is Madonna really older than me?”

“Is it really a bad idea to go on Facebook after a glass of wine?”

Yes, much more, and no, not as much as you think…

You get the picture. Yes, being a Cancer Mom is “that bad”. It has reduced me to a quivering mess, collapsing to the floor because my legs gave up trying to hold me steady. But no, it’s not “that bad”.  It forces you to see what’s important. To live in the moment. To appreciate. To slow down, and take a breath.  To realize that we are all on the same road, with the same destination. It’s just the length of our road that’s unknown.

People say they are impressed by how strong we are. I like the saying ” You never know how strong you are until being strong is the only choice you have.”

 

A month goes by, with more chemo ward trips, more doctor’s visits, more life.

Today is The Big Day. Elliot had a CT scan a little while ago and now we sit in the waiting room, waiting for our doctor to call us in for the results.  They do the scans every three months, to check for any signs of relapse.

This morning we were all kind of crazy. Picture your typical morning, maybe you have to get the kids ready for school and yourself ready for work, your husband also rushing around getting ready. So there is the normal morning madness as everyone struggles to get out the door in time (or as the parents struggle to get everyone else out the door). But to spice things up, in this case, both parents are kind of insane, the anxiety of the past month having built up to the point of almost drowning in it. We should almost install a video camera in our home and later watch the whole scene on fast forward, it would probably make us laugh till we cry. Or cry till we laugh.

Elliot did ok until we got to the hospital. Then he took one look at the CT scan machine, crossed his arms, and declared he would have no part of it. We remembered only then that he had actually been asleep for his first scan. Not an option this time. We beg. We bribe. We get angry. He holds firm. When asked by the patient-at-first-but-now-starting-to-lose-it technician why he won’t do it, he replies “because the machine looks like a big metal bagel and I don’t want to be squeezed through a big metal bagel”.

I swear I’m not making this stuff up.

Roughly 20 minutes later (or 5 years, depending on how you count stress-minutes) he finally caves. Deep down, even though he is only 5 years old, he knows this is important. Making a fuss is his only way to have some control over the situation.

 

And now we sit here and wait for the results. Martin is staring at his mobile phone, unblinking. Elliot is sitting next to him reading a book. I am pacing. Pacing has become my main form of exercise, I am pretty sure I have burned thousands of calories with this little known fitness regimen. I watch people come and go, the anxiety buzzing through my body like really loud tinnitus. I’m pretty sure if someone touched me right now I’d give off an electric shock.

I see a little bald girl run by, she looks vaguely familiar. I pace toward her. She has run into the chemo ward and I follow her in. I almost bump into her mom, who is now helping her onto the scale. It’s Rude Mom. She doesn’t move while the nurse waits for the scale to register the girl’s weight, both of us riveted by the red digital numbers. Then after the numbers settle, Rude Mom breathes out and looks up, recognizing me. She smiles and says hi. I ask how they are doing. She laughs and says fine, although the steroids her daughter is on has turned her into a little monster! Laughs again. We chat a bit. Another mom and child come in. We both say hi, but the mom doesn’t answer, just holds tightly to her long-haired boy’s hand and waits for the nurse to come back. They stand there, awkwardly, in the middle of the room together, like a little island surrounded by deep blue sea infested with sharks. Rude Mom and I look back at each other and both think “newbie”. We don’t say it, and yes, I can now read her mind. She has joined the Club.

Without actually hearing it I sense we are now being summoned into our doctor’s office, so I speed back out into the hall where Martin is standing up and staring at me with that look on his face that is panic mixed with his “everything is going to be alright” expression.

Dr Latour is the one who escorts us into the office, but as we walk in I see Dr. Winters sitting behind the desk too. Oh my, a double date, we must be pretty special. A moment of panic while I hope we are special for all the good reasons, not the bad ones which might be interesting for an oncologist.

Dr. Winters is staring at the computer, his hand scrolling the mouse, but looks up when we walk in.

“It’s really good news”. He says.

I don’t remember much after that.

 

A Day on The Chemo Ward, Part 3

Elliot stopped watching a movie for a while and has eaten his lunch. I’m so glad he is eating well, but I am also calculating how hard it will be to wash the car seat if he’s sick on the way home later. It’s important to choose food colour wisely.

 

He really is handling this all so well. He amazes us. But then again, we amaze us too. We are really coping with this well. We are past the terrified-beyond-belief point, and have settled into nervous acceptance. People say cancer makes you stronger. I guess so. But really, what choice do we have? I can’t exactly just curl up in bed under a heavy blanket and come out in 6 months, can I?  (Oh how I wish sometimes I could…The doctor gave me some anxiety meds to help me “cope” but I never used them. I really wish there was a “six months under heavy blanket” prescription. By the way, I never thought I would be someone who said “meds”. And now there you go, I’ve gone and written it. Probably all those omega 3s from the salmon sandwiches making my brain all light and fuzzy.)

 

The thing we didn’t know, going into this, is that Elliot will continue to be a real boy, and that we will continue to have to be real parents. He’s not acting like a patient. It’s funny, at the beginning he got a lot of get well soon cards.  It didn’t make sense to him. He feels fine, always has. Only when he has the nausea, which is only for a few days after the more intense chemo treatments, but even then he still manages to stay cheerful. To him this whole cancer thing has been very intangible. He never felt wrong even before diagnosis, and for that I suppose we should be eternally grateful. We got lucky to have found it when we did. I noticed the lump sticking out of the side of his belly after his bath one morning, and since I’m a worrier, I brought him to the pediatrician the same day. Felt foolish. Actually said to her when we arrived that I was probably wasting her time. But the look on her face when she examined him… Fast forward 8 months and here were are. Lump gone. Kidney it grew on too. Chemo successfully destroying all the baby lumps that had grown all over his lungs. Radiation therapy having zapped the empty space where the main tumour used to be to make sure no little stray cells decide to make trouble.

 

But other than the fact that our child has cancer (there’s a great opening line), our life goes on like everyone else, with the same issues as everyone else. We have jobs and school and chores and all the millions of things normal parents juggle every day. We try to make time for the two older kids so they don’t feel abandoned, we try to make time for each other so that our relationship thrives. By that I mean of course that we all watch tv together. Ok we also have loud indulgent family suppers together, not every night since our family of 5 not surprisingly has 5 different schedules. But we are surviving this together, all of us holding on to the fact that medicine is probably going to keep us together for quite a while, not really needing to talk about how close to the precipice we have come.

 

As I sit here in the chemo ward, I think about my two older boys and feel a wave of motherly love combined with a sudden desire to text the oldest and ask if he really did remember to take the garbage out this morning when he left. Parenting is all about balance.

 

Suddenly the doctor comes in to check on us. All the parents drop what they’re doing and sit up. The Rude Mom even stands (such a newbie! Never appear so desperate in front of the doctor! It’s like dating, you have to make them come to you). Martin puts his phone down. It’s Dr. Latour, and she scares the crap out of me. I spend my time whenever she’s around half terrified and half furious. I have no valid reason for this, she is actually much shorter than me, I could take her. Ha ha. No, the reason I am angry and scared is because she was The One. It was her who gave us to official diagnosis. “Your son has cancer. It is very advanced. His odds are 50%. But we will cure him.”

 

I have replayed that conversation over and over in my mind so many times it’s like an old movie now. I’ve tried to logic my way through it. How could she say the odds are 50% but in the same conversation, say “we will cure him”. Those statements don’t go together. Did she mean that statistics say 50%, but their treatment will work better than that? Or did she mean we will “try” to cure him? But she said it twice that night. “We will cure him”.

 

The conversation goes around and around in my head like a merry go round, making me dizzy. “Odds are 50%. We will cure him. 50%. Cure.”

 

I would ask her for clarification if I wasn’t so damn scared of her. Also it is unlikely she would remember our exact conversation of eight months ago word for word as she probably hasn’t been replaying it over and over in her head like a maniac.

 

My fear and anger do not come from anything about her personality, or her treatment of Elliot, or how she treats us. In fact she is very kind and patient. She obviously really cares, when Elliot told her he wanted Santa to bring him a toy hospital for Christmas she sighed and hugged him.

 

It’s because it was her who gave us the bad news, and because of that every time I see her my body and soul go back to that moment, and I am shaking with fear and fury. Inside only, of course, on the outside I act just like all the other moms, which is that I try to make sure she likes my child and me best.

 

She does the rounds, stopping at each bedside and talking with the parents, going to Rude Mom last (See? Too desperate.) She doesn’t really stay long, each of us had a private meeting with her before our chemo dose today, where our child was thoroughly checked over and our questions answered, the treatment plan discussed. She’s just here now to make sure everything is running smoothly.

 

When she checked Elliot earlier I felt a wave of fear overtake me as usual when he was lying on his back on the examining table, shirt off, and she started to feel around his belly. She always starts on the left side, where he still has a kidney, and presses into his stomach like she’s kneading bread. I wonder if she realizes how much the parents are holding their breath during those moments.  Waiting for her to be done, watching to see if she is acting normal or concerned. Does she realize how we watch her face for the slightest hint that something is wrong? To her, this is routine, she could be thinking of something completely different while examining him, and we are on the edge of our chairs, holding our breaths. She could suddenly remember that she forgot to return her library books, and a look of concern could flash momentarily across her face, and we would die. I’ve already died a hundred deaths that way.

 

There’s another doctor we see sometimes, Dr Winters, who is one of the head honchos. He is older than Dr. Latour, and is always smiling and relaxed. I wonder how you get years of experience in pediatric oncology and still manage to not drown every now and then. They must see some awful things. They live it too; they all, without a doubt, want to cure our kids. The nurses too. How do they keep smiling? Then again, how do I?

 

Dr. Winters always has a good expression on his face while he’s examining Elliot. By that I mean, if you happen to be a parent sitting there analyzing facial expressions with the hope of determining whether your child will live, he fills you with hope. He’s just always so casual and relaxed around us. I fear he’s like that with everyone. I would like to believe it’s because he is so pleased with how well Elliot is responding to the treatment and is completely unconcerned about his recovery, but there is a part of me that believes this is just his normal personality. He could actually be telling you multiple new tumours have been discovered in your child’s entire body from the tip of his nose to the smallest toe, and you would smile dazedly and think everything is great.

 

It was Dr. Winters who gave us the results of the second CT scan, the one done after 6 weeks of chemo. He started by saying it was good news, as soon as we entered the room, before we even sat down. That set the scene. We hardly listened to anything after that. At one point I remember asking if it meant that a second operation on any lung tumours was definitely ruled out, and he casually scrolled the mouse while gazing at the CT images on the computer and said “hmmm… well… I can’t completely rule out the possibility of a second operation…” He said it in the same cheerful, casual way he always sounds… Like, he could have been looking over the dinner menu and said “hmmm… I can’t completely rule out the possibility of dessert…”

 

So ok I guess I have trust issues. I don’t completely trust the doctors. I analyze everything they say, every way they act. And yet they are truly amazing people. Dr. Latour, for example, was the one who met us and admitted Elliot to the hospital pediatric oncology floor (It’s a whole FLOOR), eight months ago, before we knew exactly what this was Elliot had in his abdomen. She greeted us at 8:30am with another doctor, Dr. Nelson. They both examined Elliot, discussed with us what they would do that day (blood tests, CT scan for which they would have to put him to sleep, results later in the day).

We saw them come and go, passing in the hallway outside our room throughout the day, as our worry slowly increased and we started to wake up to the fact that we were possibly in this for the long term… We still were so innocent then. I saw Dr. Nelson running down the hall late in the afternoon toward another child’s room. I remember thinking, “oh, he looks worried, and he’s running. Something serious is happening!  I hope nobody’s kid is desperately sick!” Not realizing how close my own child was to needing a doctor to run to his room…

They had a few emergencies during the afternoon, and we were only finally summoned to a private meeting room with him and Dr. Latour at 8:30pm, to be given the results of the CT scan. They asked us to come alone, and they arranged for a nurse to sit with Elliot. That’s when my heart started stopping.

 

I won’t go over the details, it is still too hard. But my point was, notice the time frame. Those two doctors were already there before we arrived at 8:30am, they were still there to give us the results patiently at 8:30pm… and they didn’t leave even after that. Dr. Latour stopped by our room some time later (the clock actually stopped for me at 8:30pm that night, so I have no idea how much later it was… I can tell you roughly how many tears later it was, and how many punch the wall moments later it was…) Their dedication to their job, and to curing our kids, is remarkable.

So trust is what I have to do. It’s all I have. She said they would cure him, and it seems to be happening. It’s late, the house is quiet again, and time to sleep.  More later.

A Day on the Chemo Ward, Part 2

A new kid has come into the chemo ward, which is great for me because it gives me something else to focus on.  I don’t want to indulge in worrying thoughts so it’s better if I can people watch.

The new kid is a teenager. They get to me the most. Maybe because I have two of my own. My teens are not too affected by Elliot’s illness, perhaps because when we told them it is a highly curable cancer, they, strangely enough, believed us. That’s what you get for raising confident, self-assured kids. I am generally alone in my obsessive worrying. But I worry enough for all of us so our family worry quota is full anyway.

The teenager is a boy, quite tall, and wearing a very cool looking wool hat, black with a red design on the front, that, unless I am mistaken, looks like a skull and crossbones.  Teenage irony? He keeps the hat on all the time, even after taking off his coat and shoes.  He is so physically different from the other kids in here it almost feels like he walked into the wrong ward. Even my five year old looks tiny by comparison. The nurse gets him to stand on the scale, the same one Elliot was on a few hours ago, while Martin and I hovered nearby glaring at the digital read-out as it settles on a number, trying to force it with the strength of our stares to increase a bit more. (Martin and I don’t really talk about these moments, so I don’t actually know if he is trying the mind-control-stare-thing on the scale, but I like to imagine he is putting all his energy into it. Hate to think I’m standing there controlling the number with my eyes burning from non-blinking all alone).

Despite his height and age, when the teenager stands on the scale he suddenly  seems just like Elliot to me. Perched there with his too-cool hat hiding his bald head, his thin teenage body obvious under the oversize t shirt and low hanging jeans.

He hops off the scale and sits casually on the edge of “his” bed. He looks at us and says hello politely to each parent. I notice his eyes linger a bit on the Rude mom’s daughter and her long blond hair. It’s not jealousy though, I think. Might be pity. Or… maybe it’s a flashback.  A memory of when it all started for him.

I think it’s harder on the teenagers. They know what’s going on. They understand the possibilities. They also know what a “side-effect” of medication is, they know why they happen and when they will happen again. They understand they are being made to feel awful so that they can get better. But like the younger kids, they really just want to have fun with their friends, and they don’t want to be here. I think they feel the unfairness of this even more. And it is unfair. They should be at school or maybe downtown, hanging out with their friends,  eating junk food, going to the movies, laughing at jokes we don’t get and listening to music we don’t like,  discussing anti-globalization like they know what they’re talking about and then twittering about it in complete innocence, posting updates and funny pictures on facebook every 5 minutes. They should be studying for their biology exams, not hoping biology is what keeps them alive a bit longer.

His mom comes in. Definitely not a newbie. She smiles at each of us and says hello, looks directly at our kids and smiles at them too. She acts like she is home. Or at least, like she feels safe here. And maybe that’s it, here is where her son will be taken care of by someone other than her for a change, where someone else can take over the worrying for her for a while. And here, she is not a freak, she fits in. She is one of us, in fact, it turns out she’s an old pro. Her son has relapsed from leukemia, originally diagnosed four years ago. He’s been in treatment for a few months, receiving chemo, and they are now looking into stem cell transplant options. When you hear that, you imagine a poor frail guy lying in a hospital bed and hovering on the edge of life. But this boy is sitting there drumming with his hands on his legs, listening to a song on his ipod, gazing out the window. He looks fine. He actually is, in reality, hovering on the edge of life, but he also has some good odds on his side. Not as good as the rest of us in that room; relapses are harder to cure, but for now the treatment is keeping his cancer from leaching his life away from him too quickly. It has slowed it down, put the brakes on the cancer steamroller plowing him over, but it hasn’t killed it. The drugs are just not strong enough for that. But he is very, very lucky to have a brother, and he is hopefully even luckier if that brother turns out to be a highly compatible match. A stem cell transplant for leukemia can be done even with a stranger’s donation, but the closer the match, the higher the cure rate. His mother has explained all this to the Rude Mom, just chatting in a friendly, casual way, while Rude Mom stares at her like a deer gazing silently into the headlights.

So, what are his odds? I watch him as he gazes out the window. His name is Patrick. His mom has said it several times, in each conversation she says his name frequently, like saying it keeps him alive. His music is on too loud, we can all hear it, the staticky noise of music escaping from headphones. It’s some kind of annoying song that my older kids would like. He taps away at his legs, a casual drummer lying in bed in a roomful of strangers. His mom has gone back out now and is talking to the nurse.

I do some googling on my phone. I want to know more about stem cell transplants. I used to be afraid of looking these things up, but not so  much anymore.

If his brother is a good match, his odds, if he survives the transplant of course, are between 50 and 70%. If the treatment is a go, which they should know soon once they are done analyzing the brother’s cells, they will admit Patrick to the hospital and start destroying him. By that I mean they will begin the intense radiation and chemotherapy treatment to completely wipe out his own bone marrow, to make room for the new stuff. Also to destroy all the cancer hiding in there.

Of course, they kill everything else while they’re at it, and he’ll have a high risk of getting an infection from his own body. He’ll have all the fun chemo side effects, the nausea, mouth sores, aches and pains, etc. He has a fairly high risk of long term side effects like infertility and cataracts. Then, once he gets through the transplant and the risky period for the first weeks right after, he’ll have to keep taking immune suppressing medication for a long time so that his body doesn’t  destroy the new cells. But that means he also won’t be able to destroy any viruses or bacteria he is exposed to in the outside world. It’s like walking on a high wire, balancing precariously on the edge of possibilities.

It turns out they get the results that day.  Patrick is lucky. His brother is a good match. The mother is acting all happy, but also looks like she might cry. Her hands are shaking. She actually says “Patrick” three times in a row without attaching a sentence to it. For some reason, I keep wondering how the brother feels. They have a long road ahead of them, and about an hour later they leave, headed for the admissions office. Good luck, Patrick, I whisper in my mind. See you when they let you out next year.

I am humming one of the annoying songs he was listening to and find I like it after all.

 

…More in a few days…

A Day on the Chemo Ward.

Many people have asked me what it’s like in the pediatric oncology ward at the hospital, so I thought I would tell a story about a typical day spent there.

Right, who am I kidding? Not one person has asked me what it’s like in the pediatric oncology ward, who in their right mind would want to chat about that? But I got your attention, right?

Before you run away in fear, let me start by saying, it’s not as bad as you think. Really. I know that before I entered this cancer world I would have imagined any hospital scene to be a cross between M.A.S.H. and One Flew Over the Cuckoo’s Nest. I would have imagined misery and madness, pain and suffering, trauma, doctors being paged and running down the hall to some emergency, people yelling “intubate!” (that’s from Scrubs) and of course, Dr. House glaring at me as I plead with him to not do some kind of weird alternate last chance treatment to save my life.

It’s not like that. In fact, just the opposite. It reminds me of a story I read about the US Airlines flight 1549, the famous airbus flight which successfully ditched into the Hudson River in January 2009, with all people on board being saved. In a movie, when an aircraft has an emergency, there is mass general panic, people are screaming and crying and it is complete chaos. So, since most of us have not had this experience (and I hope none of you do, especially on my watch) we assume this to be likely true. But the reality is quite different, as described in the recounting of Flight 1549.

People heard the loud bangs and saw the engines flame out, and within 6 minutes after take-off the aircraft was in the river. No one panicked. The crew did their job, amazingly well. The passengers stayed calm, followed instructions, helped each other, and quietly exited the plane, to be rescued on the wings by passing ferries.

The illusion of panic and terror is only that, an illusion. The cancer ward is not a terrifying, horrible place either. (Although I think I might have encountered Nurse Ratchet once). People are laughing, chatting, living their lives. Yes, some are ending their lives. Well, we all are somewhere on that road, aren’t we?

I deal with anxiety by writing. So when we have to spend long days at the hospital, I often write, usually just in my mind by people watching and imagining the stories I would tell about them, then writing it out later at home when the house is quiet. So for the next few blogs I will summarize these stories into one. To protect the anonymity of the other children, parents, doctors and nurses, I have of course changed names as well as some details.

Time passes at a different rate when you’re in the hospital. There are moments when time rushes past you and you wish you could make it stop so you can catch your breath. But usually the time ticks forward at a slower pace than the outside world, and you can drown in the boredom.

Today we are at the hospital in the pediatric oncology outpatient department. We spend the whole day here on the “big chemo” days. Because we are here so long they assign a bed to us, in a ward with four other beds and a small playroom. Other kids and parents come and go throughout the day for their treatment. I sit next to Elliot’s bed and watch them come and go, sometimes hoping for a conversation. Chemo treatment, as it turns out, is not only toxic and nauseating, it’s also quite boring. Anxiety and exhaustion mixed with boredom is an interesting combination… I say interesting with a bit of sarcasm of course, it’s interesting the way vodka, gasoline and old milk mixed together would make for an interesting cocktail.

One woman just arrived with her daughter, who looks around age 3. The daughter still has a head full of hair… Am I jealous? Yes. When do I get my kid back? I know he’s right there in the bed next to my chair… But he does look different with no hair or eyebrows, and although it’s the least of our worries, it is the most visual reminder.

The mother is rude. She is simply not following any of the standard politeness rituals and rules. Nothing major, she just isn’t playing the social etiquette game. She talks very patiently and calmly to her daughter while they get the girl settled into her bed. The nurse says she’ll be back in a while; the mom doesn’t answer. Then mom reads the girl a book, then plays a puzzle. I get up and walk by a couple times, pacing, make eye contact, smile. She looks away without so much as a smile. Rude.

There are two other moms in the room too, and of course my husband, who is sitting on another chair next to Elliot and staring at his mobile phone, tapping it and swiping it occasionally. The bed next to Elliot has a little girl with a pink flowery dress. She looks very young, almost babyish, until she smiles, then she looks devious, but in a cute way. Her hair is almost gone, just a few thin wisps. She is very tiny, but probably also about three years old. Her mom is hovering over her daughter, tucking the blanket around her legs each time the smiley girl kicks it off, which is roughly every 2 seconds. She sees the rude mom reading a book to her girl and gets one from the book case too. Everyone is reading to their child, except me. Then the family in the fourth bed leaves, and we are all a bit silently jealous because it means if they hurry they will probably get to have lunch at home. The hospital coffee shop here actually has some great sandwiches. Two types: salmon wrap and roast beef on a kaiser. That’s it. I was happy the first 20 times or so I ate one of them, for breakfast, lunch and supper… Elliot was diagnosed 8 months ago so I am slightly losing my mind nutritionally. I put honey and tabasco on the salmon once just to change it up.

Elliot is watching a movie on the ipad. The reason I am not reading a book to him like all the other moms is that I am tired and anxious and non competitive. He has another 4 hours of chemo to go, the bag of red stuff hanging on a hook behind him, draining quietly through the tube that snakes around the bed and under his shirt, into his body. I want him to just sit there and take it, I don’t want to play with a puzzle or read a book. I feel the irony of that, that we are here to save his life so that I can ignore him while it’s happening. But I need to hide inside my own head a while. So I have a notebook and write my thoughts and observations.

The rude mom is now texting. Her daughter is busy with the puzzle, so the mom is now momentarily free. She texts quickly, jabbing the phone with angry fingers. Her eyes dart back and forth from her phone to her child, almost manically. Then she gets a call and talks briefly on the phone while pacing around the bed. We all pretend to be very busy not listening. She gives a brief report, blood count, waiting time, length of treatment, next step. When she hangs up she looks over at us to see if we were listening, but our eyes scatter with the wind of her glare.

She is rude. There’s just no way else to describe it. But not the normal rude. This is the Cancer Rude. It’s a totally different attitude, and one that none of us in that room would criticize her for. We just note it, and give her space.

Why is she Cancer Rude? Because she just found out a few days ago her little girl has leukemia. We know that, all of us in this room. We heard her talk about it on the phone, but we already knew she was a newbie. We knew it when she arrived and didn’t say hello, and spoke so syrupy sweet to her daughter, and stared in panic when the nurse left, and didn’t make eye contact with any of us. And we knew it anyway because, well, her kid has hair.

Beautiful, long blond hair.

Other than the cancer-newbie rudeness, there isn’t much to distinguish this woman from anyone else on the street. She is walking and talking and texting like anyone else would. But, of course, she is screaming inside. She probably hasn’t slept a normal night since The Diagnosis. She actually may never again. She has entered a world from which there is no escape. Even after treatment, and fortunately there are good odds that the treatment will work, she is not going to be leaving the cancer world. She is going to adapt, and she will become one of us. The Cancer Moms.

I ended up talking to her. She is actually really nice. Just scared beyond belief. So scared she is no longer aware of her behaviour. I know I was like that. Hey, maybe I still am.

The Smiley girl has the same cancer as the Rude Mom’s girl. I feel a pang of jealousy or envy as they talk, because they have more in common. Envy? Am I crazy? Leukemia treatment takes two to three years! Elliot should be done in 2 more months if everything goes according to the protocol for his kidney cancer. Then again I guess that’s the advantage of having a cancer that forms a big lump that you can just cut right out of the body (along with a vital organ of course). Leukemia is everywhere, there’s nothing to cut, nothing to remove. So ours is a better cancer. Ok so Elliot has a massive scar across his stomach and one less kidney, it’s still better, right? Shall we have a cancer competition?

Smiley Girl’s mom looks tired. She has deep bags under her eyes, I note as I stare at her surreptitiously. Ok I’m actually just blatantly staring at her, but she’s busy picking the blanket up off the floor where Smiley Girl has kicked it again. I look at my husband and realize he looks pretty tired too. I carefully analyze him as he stares unblinking at his phone. He actually does have quite a few wrinkles around his eyes today, although not unhandsome. It’s kind of unfair that men can have handsome wrinkles. Were they always there? I start to worry a bit about him, then tell myself to stop, which only increases my worry. Sigh, I have to stop this thought process, quick.

Oh relief, a new kid comes in, to take the bed of the one who left. Something else to focus on. Certain things still put me over the edge, even though I’m no longer a newbie. I’m better at controlling it now, ripping my brain away from the scary thought and forcing it onto something else.

I’ll leave you now as the new kid enters the scene, and will continue in a couple days. It’s late and the house is quiet, and I should sleep too. So stay tuned for scenes from next blog’s “Chemo Ward”, with action-packed boredom and comedic tragedy!

Advice to Adults With Cancer from a 5 year old

Here’s a light-hearted look at cancer from the point of view of my son Elliot, who was only 4 and a half when diagnosed. I know many of the adults I am in touch with who have cancer, or who are helping a person with cancer through this journey, will relate!

Advice to adults with cancer from a 5 year old

1. It is perfectly acceptable to have a complete tantrum and throw your shoes around just before leaving for the hospital.
2. You always deserve a present after chemo.
3. If you feel like showing more respect and politeness to the hospital clown than your oncologist, that’s ok.
4. If you manage to grab the syringe of medicine from the nurse, it’s their loss and you are then allowed to squirt its’ entire content around the room.
5. You are allowed to complain loudly about any smells like perfume, but you are also allowed to fart freely whenever and wherever you want.
6. Anyone who says “this one tastes like syrup” better be not be lying or they can expect to catch some spit.
7. You are allowed to worry about life and death, but only to the same extent that you worry about whether Santa Claus will be able enter your home if you don’t have a chimney.
8. Speaking of worry, you are not allowed to worry about anything that is not going to happen today or tomorrow.
9. Any bad thing that happened in the past should be quickly erased from your mind using ice cream.
10. It’s ok to throw up directly on your caregiver instead of into the bucket they are holding. It will create warm and funny memories for them once this is all over.
11. Good friends may stare when they first see you without any hair, but they are quickly more interested in all your new toys. So make sure you have lots of new toys around all the time.
12. It is the right thing to do to jump off the examining table if the doctor’s hands are too cold.
13. A popsicle for breakfast is a good idea and goes well with bacon.
14. If someone rubs your bald head and says you’re cute you should stare at them in complete boredom until they stop.
15. Always believe that scars are badges of courage and make you look like a pirate or a superhero.
16. Jumping on the bed is a perfectly acceptable form of exercise.
17. Someone should always be available to carry you if you don’t feel like walking anymore and they will be grateful if you look at them lovingly and say “You’re my slave.”
18. It’s a good idea to frequently press the little button next to the bed that makes the nurse come running, because she might be lonely and bored, and enjoys picking your crayon up from the floor.
19. The only part of hospital food you should eat is the desert. The rest is not really food anyway.
20. Make having fun your priority, all the time, no matter where you are or what’s going to happen next.