What to do or say, and Thanks to all who did.

So it’s happened to your friend, co-worker, family member, neighbour, or just someone you know and care about. A tragedy of some kind, maybe a cancer diagnosis like ours.

Now you want to know what to do. What to say. Do you bring it up? Or do you say nothing, giving the person their privacy? What is “the right thing” to say? How can you help them without causing them to have to relive the sadness? Especially when there is nothing you can do or say to fix it, to make it go away and make life go back to how it used to be?

There is no perfect answer, no “special statement” you can make that will be just right. The person you care about is not expecting you to come up the right thing to do or say, for the simple reason that they are also in unfamiliar territory. They don’t know how to act either. They don’t know if they want to talk about it or not, they don’t know how to behave, they’ve never done this before either!

Of course I can’t answer for everyone. But I can tell you what helped me.  The most important thing, no matter what, is, don’t abandon the person. By that I mean, don’t pretend “it”, whatever it is, hasn’t happened. Don’t assume if they need help they will ask for it. Don’t think that they would rather just act normal. Normal doesn’t exist anymore.

One of my co-workers came up to me on my first day back at work after Elliot was diagnosed. Everyone knew of course, my workplace is one of these places where everyone knows everything about everyone. The joke in our workplace is that your coworkers  would all know about your imminent divorce before you do.

This was not someone I knew particularly well, although in my line of work people do get to know each other better than in most places.  So he just walks up and stands next to where I am sitting at work. He waits till I am free to talk, and quickly says: “I don’t know what to say. Here I am.”

And that’s all that was needed. I felt, just for a moment, less alone.

My family, friends, and coworkers have truly amazed me during this. So yes, here comes the mushy part, where I tearfully thank everyone for all they have done for me (I am picturing myself in a designer evening gown at a microphone, clinging to an Oscar as I make my thank you speech).

To my mom, who has also been battling cancer for twelve years, and who dropped everything and flew 4000 miles to be here and help out. Three times, within 10 months.

To my dad, who is always the first to read and email me about a post I’ve written on the blog updating people about Elliot, despite a 6 hour time difference. (Does he have some kind of alarm that wakes him if I post something, so he can be first?) He also has made the long trip here twice recently, to be here for important moments.

To my big sister, who carefully plans and saves up for her dream trips, then blows all her savings on flights  to Switzerland. Over and over. And then says it’s fine because she needed more chocolate anyway.

To my little sister, who is the most patient playmate Elliot could have.

To the rest of my family, my brothers, my cousins, aunts and uncles, my parents’ friends and everyone who keeps sending me messages and letters of support, little gifts and cards for Elliot, messages on my blog. You have gone out of your way to show me you care, and I hope you know what it has meant.

To Martin’s parents, who arrived in our hospital room less than 24 hours after hearing the news, even though they live in Denmark.  To their patience with me as I ask them one million medical questions (they are a doctor and a nurse) and have them review every blood test, scan and protocol, even though they are all in French (did I mention they are Danish?). They have followed this drama every step of the way, cancelling trips so they can be “on call” for us (apparently Japan can wait.)

To Martin’s sister, who flew down right away for a weekend, to support her brother through the initial shock. It was her first time in years (or ever?) with a whole weekend away from her three young kids, and she spent the entire time… playing with our 4 year old.

To my friends…

One who listened to me for a long time on that first night on the phone, and who texted me at the hospital that first night until 2am (I didn’t notice the time until a few weeks later when I was reading over the messages… so a sleepless night for her too.)

One who sends me a message every single time I’m at the hospital to check on me (I’m not even sure how she does this, we’ve been to the hospital over 100 times by my calculations).

One who drops cookies and chocolate in my mailbox randomly. (The chocolate, I insist, is only for me. The cookies I share with the kids.)

One who sends me uplifting, caring messages on a regular basis despite having gone through her own personal tragedy recently, and is always available for coffee and a chat.

One who lives in Canada and felt helpless to know what to do, so started sending me funny random emails about her daily life on a regular basis on the theory that it would distract me (the suitcase-shaped wedding cake was a classic).

To all my friends with kids who now know almost as much as I do about white blood cell levels and germs… And bring their kids over to play with my son inside even on beautiful sunny days when they would probably rather be at the park…

To my friends at work who, feeling the need to “do something”, collected so much money from all my coworkers that Elliot had a second Christmas…

To my girlfriends here who bought Elliot an end-of-chemo gift he’ll never forget: a big-boy bike. And then surprised me with a fabulous gift certificate to a spa.

And several friends who just keep checking on me, sending little gifts, leaving things in my locker at work, taking me out for coffee and drinks (oh and I’m not forgetting our “special” night out in November girls!)

To all our family and friends who came to Elliot’s end-of-chemo party, some travelling quite far to be there, some wearing very special t-shirts! And those who wanted to be there but couldn’t make it. It was a magical day for him.

To my new “cancer” friend, who’s son had this very cancer years ago, and is now a normal 20 year old. She let me know what I was in for but also gave me hope. And some good advice in answer to my desperate question “But how did you cope?”, she calmly said “You cope because you have no other choice.”

To ARFEC (Association Romande des Familles d’Enfants Atteints de Cancer), who were there to support us from the first day.

To Elliot’s teacher, who has magically managed to make him feel like he is still part of her class despite the fact that he has missed almost the entire year, by dropping letters, cards and little projects in our mailbox, and by teaching a class of twenty young children about cancer in a way that made them understand and relate to it without turning it into something weird and scary, so that when Elliot comes back they are ready for him.

To my co worker who made sure I knew he was there if I needed to talk, anytime.

To the anonymous donor who wanted to give us 5000chf when our insurance wouldn’t cover one of the chemotherapy drugs. (The money was sent to ARFEC instead, and the insurance company changed their mind after the newspaper story created an uproar of public outrage).

To the guy at the local boulangerie who keeps giving me a free cookie to take home for Elliot, even though the subject of Elliot, cancer, or the type of cookies Elliot likes, has never come up. (And it is exactly the right kind of cookie.)

To our pharmacist here in Rolle who has spent hours researching different medications for Elliot, trying to find the ones that “taste ok”, even to the point of making pills herself.

To the father of my two older boys, for letting me keep them last year at Christmas even though that was not normally the arrangement, no questions asked.

To my two older boys, who are just great.

To my husband, where do I begin… Somehow we created this perfect little boy with this tragic little flaw, and despite everything, I wouldn’t have it any other way.

And to Elliot, who when he whispered goodnight before falling asleep tonight, put his arm around me and murmured  softly in my ear“ You know, I love you and papa just as much as my polar bear…”

THANKS.

(Wild applause and standing ovation from the audience now as I gracefully exit the stage… and probably tumble down the stairs because I’m not used to high heels…)

 

Elliot’s end-of-chemo party gifts

Fear

The three of us!

Elliot, walking into the bathroom where I was brushing my teeth, looked at me seriously and said “I think my heart is going to explode.”

Needless to say, I dropped my toothbrush and asked him what he meant. He put his hand on the upper left side of his abdomen and said, with a worried look, “It hurts right here.” I knelt down in front of him, and lifted his shirt.  The area he was indicating was roughly where his remaining kidney is, so my heart started beating a little faster. I asked him to describe the pain.

“Well, I was jumping up and down on the sofa…” (does a little jumping dance at this point to demonstrate), “and suddenly I felt this pain!”

We stare at each other a bit.  I tentatively ask if it still hurts now, since he is looking pretty much ok.

He hops around a bit, then declares “Yep, still hurts. Hey!” A lightbulb goes off on top of his head. “Isn’t this where my other thingy that makes pee is? Maybe it’s a new lump?”

A lump is forming in my throat as he says that, but I calmly say “You mean your kidney .”(“Yeah, kidney”, he repeats). “I doubt there would be a new lump there Elliot”, I say, amazingly staying completely calm, “ For one thing, you had a scan that didn’t see anything, and also you are still getting chemotherapy which would make sure that never happens again.”

“Hmmm,” he thinks it over, actually scratching his bald little head. “Oh maybe it’s allergies like you said I would have!”

Both Martin and I have hay fever and have been suffering with it a bit recently, and were wondering if Elliot would eventually have it too.

“Maybe” he says excitedly, “I breathed in those bad pollen thingies and they went into my lungs and made a hole and the air went down into those tubes where the poo is…”

Me: “Intestines?”

Elliot: “Yeah instead- tins! And now the air has made a hole!” His eyes open wide with the dramatic intensity of his prognosis.

I ask him a few more questions, and find out that he just ate a huge lunch before deciding to jump around on the sofa. I am starting to get a glimmer of a possibility.

“Elliot, I honestly think what you have is a cramp.”

“A cramp!” he says with horror, his eyes huge. “Is that really bad?”

Oh my poor sweet little boy. I wondered at the beginning, when he was diagnosed, if there would be any psychological side effects, and hoped that because he was so young, he would not be too affected.

But, resilient though he is, he knows what’s going on. Not too long ago,  on a day we had to leave for the hospital, he was in tears as usual, resisting my attempt to get his shoes on, saying he needed to watch “just one more tv show” and eat “just one more snack” and then he would be ready to go. We insisted, explaining patiently for the millionth time that this treatment was essential to making him better again. He looked at us with big tearful eyes and said “Why did I have to get this? Why couldn’t I get an illness that was easy-peasy?”.

He knows that cancer isn’t easy-peasy. He worries about the treatment, about how he will feel after the treatment, and about whether the cancer could recur. Just like we do.

I wanted to spare him all that by always acting optimistic around him, never showing him just how scared I was too. But he’s figured it out anyway.

A few nights ago I went in to check on him as he was sleeping. He had been wheezing a bit, so my mom-radar was on. He’s always had a bit of asthma so I knew it was probably nothing unusual, but I wanted to check on him anyway, because well, that’s what I do. Worry and check. Check and worry.

He looks so innocent as he sleeps there, curled up on his right side and snuggling his polar bear. I put my hand on his chest to feel him breathe.

And that’s when I feel it.

A lump.

On his upper right chest, just below the shoulder. Elliot had lung tumours in that area. Well, he had lung tumours everywhere. Lots of them. But the chemo made them all shrink.

This feels hard, like bone. I am breathing faster and can feel my heart beating, but I tell myself that it’s just because of the position he’s in. I move him down onto his back so he is lying flat, and feel for it.

Still there. I feel the same spot on the other side, on his upper left chest. No corresponding bump that would somehow make me think this is a normal part of his anatomy.

My heart is pounding in my ears now, as I sit there in the dark. I feel covered in icy sweat. I keep feeling back and forth between the upper left and upper right side. There is no doubt: he has a hard lump on the right side, the size of a quarter.

Panicking, I turn on the bedroom light and lift up his shirt.  Elliot wakes up groggily and mumbles something about leaving him alone.  And two things happen simultaneously: I see the port-a-cath bump on his chest and realize there’s no lump.

The port-a-cath bump. The same bump that has been there for the past 10 months, ever since the operation to install the port-a-cath, through which he receives chemo.  The same bump that I see every day when he gets dressed, when he bathes, and of course when they do the chemo. The bump that feels just like a hard, quarter sized lump.

He looks at me with a sleepy smile, pulls down his shirt and rolls onto his side, snuggling closer to his polar bear. “Can you turn off the light when you’re finished please?” he mumbles, and then he’s asleep again.

So I flick the switch and sit there in the darkness for a while, my breathing still fast, my head swimming.

There’s no new lump. The treatment really is working.

When does the fear go away?

Is it in a couple weeks when we get the results of the end-of-treatment scan, telling us we are “officially” done treatment and only need to come back in three months? Is it only after that two year post treatment milestone, knowing how unlikely relapses are after that date? Is it when he’s a teenager and comes home safe after a night out with friends? Is it when he moves out and starts his own life as an adult, no longer our child to worry about?

My mom has been surviving cancer for 12 years. She has CT scans every three months, and every time, there must be a bit of the “what if” fear. But she never shows it, at least not to us, her kids.

How do you live every day without being overwhelmed with worry? And yet, life involves risks, every day. When I strap Elliot into his car seat, I never think about the risk of a deadly car accident, and yet, the lifetime odds of a car accident are 1 in 4. Odds of dying from a car accident are 1 in 100. The statistics for Elliot’s cancer: 1 out of every 10,000 kids will get this, and the cure rate for those is roughly 80%. So, statistically speaking, I should be more worried about the drive to the grocery store than the cancer. But that is not how our brain works.

I wrote not too long ago about courage…(http://nicolescobie.com/?cat=16). I realize now that not only is it important to face fears during moments of crisis, but also in the long term, and every day. Life equals risk. As I was looking up those statistics earlier, I came across one important fact: your lifetime risk of dying is 100%. We try to ignore that fact, but there it is. Is there a way to turn that fact into a good thing? Maybe. It’s a reminder of how precious our time together is.

While I write this, Elliot is snuggled under a blanket on the sofa, cuddling his polar bear. Today is a chemo day.

I guess I’ll go snuggle with him.

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.