How to help someone who is grieving, in 5 easy steps, from an Absolute Expert on the Subject

I know I haven’t written a lot recently. I’ve been doing so much for Zoé4life, I haven’t had time. We’re working non stop to fund research. And we’ve also put in place a system by which families can apply to us for financial support through the social workers who are at the hospital. The first time a request for help came through Natalie and I both jumped for joy and simultaneously felt like crying. It felt so good to be able to help other people who are actually in the cancer-fight, a battle we are both all too familiar with. But we also acutely remembered the pain and shock of a family hearing the words “your child has cancer”, and knew how limited our help really was.

Still, it felt good to do something.

Because sometimes, there is nothing you can do. And the powerlessness can be overwhelming.

Like when your close friend’s daughter dies.

What do you do? How do help with this?

Some people have actually asked me for advice on what they can do to support Natalie and Zoé’s family, or other friends who are grieving, deal with their loss. They are afraid to say the wrong thing, so they say nothing and assume I have some kind of magic technique.

So here goes. My list of Expert Advice. This is of course based on Actual Scientific Evidence. You will note that any time I capitalize words I am being ironic. Except at the beginning of sentences, and then I am being a Literacy Expert.

My rambling thoughts on the Obvious Clear Path to helping a person through intense grief.

Step 1. Make sure you talk a lot about the child, share memories and photos. Uh, no actually bad idea. Showing them photos you happen to have of their child is just going to make them sad. Revise that:

Step 1. Never, ever talk about the child, make sure you avoid all subjects that could bring up a memory, including: school, vacations, Christmas, any holiday, any other child in the world, any illness, toys, bedrooms, car seats, clothing, hair cuts, movies, tv shows, books, food, travel, any other person, kitchen tables, animals of any kind, toilets, grass, trees, clouds, stars, and the beach. In fact the only safe subject is the weather and then only if it’s raining. Hmm no I think Zoé thought rain was fun. Dammit, there is no safe subject.

So, avoiding the subject is useless and wrong. In fact the person wants to talk about their child. They need to talk about her. Not talking about their child would be like pretending they hadn’t existed, which would be the worst torture.

So Step 1. Make sure you talk about the child and make sure you don’t talk about the child. Good luck with that.

Step 2. When your friend is sad, cheer them up by reminding them of how great it was that their child existed, even if for too short a time. Uh, no. Wrong. That would be denying the fact that they have every right and reason to be sad.

Revised Step 2. When your friend is sad, distract them with talk of other subjects to get their mind off the child. Be careful to avoid all subjects from Step 1.
Ok that’s all wrong. Getting their mind off their child is an impossibility, it would be like telling someone to hold their breath and not think about breathing.

So, Step 2, Feel free to talk about and remind them of the wonderfulness of their child and accept their sad thoughts that are the result of the wonderfulness of their child.

Step 3. If they need to talk about the sad parts, the horrible parts, the injustice, the anger, the pain, encourage them to open up and share these feelings and acknowledge the unfairness.

But wait, are you not therefore encouraging them to stay in a negative place?

Revised Step 3. If they want to talk about all the bad stuff, remind them of the good times, and say things like, “Your child would want you to be happy”.

Nope, that’s not right. The fact is, everything about the situation sucks. They should be mad, sad, and resentful. I’m mad, sad and resentful.

Step 3. The horrible parts happened. There’s no way around it and there’s no distraction.

Step 4. If they have a happy day, a good day, are laughing or behaving otherwise normal, remind them that they are grieving and that their behavior is odd and probably they are crazy from grief and don’t really know how they feel.

Oh wow if I actually did that I would not live to see the sun set. 😉

Step 4. Ha! If they are happy, that means the grieving is over! We can all get back to normal now.

Uh nope. That’s just not how it works.

Step 4. Happy is happy. Every moment when the person is not feeling crushing pain is a gift. Don’t question it. Embrace it and enjoy it with them. And when it’s gone, trust that it will probably come back later. There is no normal way to grieve.

I guess it turns out there is no proper way to support a person through this incredible grief.

There’s no subject to talk about to take away the pain.

There’s no distraction.

There’s no going back to the way it was before.

There’s no normal.

And I am far, far, far from an Absolute Expert on the Subject. All I can say about that title is that when Natalie read it she might have laughed. Which is at least something.

So here is my ultimate Step 5.

Step 5: Just show up.

Show up scared, and angry, and sad, or worried, confused and desperate, or anxious, overwhelmed and frustrated. Show up happy and at peace, ready to have a wave of anger blow past you if it’s that kind of day. Show up serious and sad, only to be laughed at. Enjoy the gratitude and appreciation for your presence one moment but expect to be forgotten or ignored another time. It’s ok. There are no rules, just as there are no steps that show a clear path to take through a grieving process. There’s no perfect right thing to say, and there’s no reaction that means you did the right or wrong thing. It’s not about you.

Just.
Show.
Up.

 

Feelings

How are you feeling?

I get that question a lot. How do you feel? How are you doing? How are you holding up?

It’s comforting to know that people care. But it’s also so hard to answer. The emotional range inside me can be quite vast. Sometimes I’m not even sure how I feel.

I don’t think I will ever go back to how I felt “before”. That’s because even when things are looking really good for Elliot, really quite optimistic, there is one feeling I can’t seem to get back: feeling carefree. That feeling has left the building.

There’s one feeling that is constant, that I think many cancer world inhabitants can relate to. Sometimes just a faint whisper of it in the background of your mind, other times a huge roar overwhelming you. I can’t quite name it, it’s not something I felt before this. But the best description is that’s it’s a cross between anger and fear. Those two feelings combine to make one overpowering feeling… Shall we call it Fanger?

And it’s not just plain anger and fear, but outright rage and overwhelming terror, all rolled into one emotion.  That’s Fanger.

It’s what you feel when you think about the Whys. And the What Ifs. It goes quite well with a nice serving of the phrase “It’s not fair.” (Add whatever extra words in that sentence you deem necessary).

Another strange feeling I have felt since beginning this cancer journey is called Wope. It’s a combination of Hope and Worry. It feels like juggling ten sharp swords while riding a unicycle on a tightrope which is maybe hanging over a net… Nobody really wants to be around you when you’re feeling Wope so it’s best to keep it to yourself.

Oh and then there’s that lovely feeling Anxhaustion, the overwhelming anxiety mixed up with absolute exhaustion, which is encountered usually about three hours before you can possibly go to bed, and often being especially high on the days before a scan or MRI.  Anyone messes with a person feeling Anxhaustion is likely to get their head bit off.

Oh but wait, one of my favorites is Imdreadcipation, isn’t it yours too? That wonderful cocktail of impatience, dread and anticipation you feel while waiting for the test results, waiting to see the oncologist, waiting to get the chemo, waiting to have a scan, waiting, waiting, waiting…

Then again there’s that occasional bout of Nervanity, that combo of nervousness and insanity that often strikes suddenly, like right after your child has knocked over the tray of medicine in his struggle to get away from the nurse and you have to start the whole procedure over, and you are overcome with completely inappropriate laughter.

And let’s not forget Sorryuckyourself, often felt when people stare at you when you’re out in public. I’ve felt it when stopping quickly for groceries at the store after a chemo day and Elliot has an “I want a toy” tantrum. It’s a mix of feeling sorry for yourself and feeling like telling people exactly what they can do with their parenting advice.

But the very best, I guess, is Grelief, the mix of relief when you finally get good results and grief at the knowledge that your life will never be the same again.

Worry

The subject of worrying is one that comes up frequently in my mind. I often have little debates with myself about my worries; in fact sometimes the little debates turn into outright arguments… How dare you think of this worry again?!?! We just spent the whole afternoon yesterday going over this! Remember? We looked in the mirror and told her to cut it out, it was senseless! Did you not listen?

The thing is, I can worry about almost anything. There is a part of me (that alternate person inside) who comes up with stuff you would not imagine. My husband likes to say I would not want to miss out on any opportunity for a good worry. He’s kind of right, the worrier in me loves to get her teeth into a real good worry bone and gnaw at it for hours, while the other, more sensible me is the one trying to grab the bone away and toss it into the garbage. It’s a dangerous battle.

About a month ago, I noticed that Elliot was sweating while he slept. His new little wisps of hair were all damp and there was a damp spot on the pillow.

Panic.

If you google “child cancer” and “night sweating”, you will immediately find out that these two subjects are inexorably linked like salt and pepper, like peanut butter and jam, like backflips and Jesse. It’s basically a clear cut case: bad, bad news.

I worried at it the entire next day, occasionally being distracted while playing with Elliot who was running around being silly, or by making him another meal or snack since he is eating all the time.  I returned to my laptop several times in between taking care of my active, energetic boy to google alternate variations of the same thing: “sweat” and “wilms tumour”, or “sweating” and “cancer recurrence”. The prognostic was always just as terrible.

Finally I have the courage (and time) to tell my husband late that evening. His reply: “He’s always been like that, hasn’t he?”

I think it over.

Yes, actually, it does seem that he often has been kind of a sweaty kid.

In fact, I remember some photos of a trip we took a few years ago, and his hair is all damp.

So maybe?… Just maybe… It’s NOT a sign of recurrence?

Staring to feel a bit of relief. A bit of light is shining into my dark tunnel of despair.

For about an hour, the worry subsides. Then…

“BUT WAIT!” yells the other voice inside my head.

“What?” I answer cautiously, unsure I want to hear the answer.

“Sure, he’s always been like that, but HE ALWAYS HAD CANCER!!!”

“Wait a minute.” I reply, trying to quell the rising fear. “He didn’t ALWAYS have cancer. We don’t know how long it was there before it was discovered. “

“That’s right” says the voice, now filling me with cold dread. “YOU DON’T KNOW!!”

So I google everything I can think of to try to determine how long the cancer was likely there before it was diagnosed, and cannot find any definite answer. I basically find every possibility from the option that it started to grow only a couple months before being found, to the possibility that it was already in the works when my husband and I went on our first date.

To the worrier in me, this means I have to keep worrying. Until I have a definite answer, the worry cannot be shut down.

At one point I get exhausted and somehow manage to stop thinking about it.

The next day at work, my worries are back at full force.

A good friend and I are sitting in the break room chatting. She knows me well enough to know when I’m not ok. So she asks. So I tell her all about it. About the Terrible Night Sweating Symptom.

She doesn’t even miss a beat. “Nicole.” She says, and waves her hand toward the window, where the sun is blindingly bright on the hot pavement. “ It’s 36 degrees out. Of course he’s sweating. We’re all sweating.” She smiles kindly, but also looks like she knows I’m slightly insane. (This is the beauty of my friendships, they like me anyway.)

I stare at her for a while, the madwoman in me trying to come up with a plausible counter argument.

“But he didn’t sweat like this while he was getting chemo.”

“It was winter.”

“Yeah, I guess you’re right…” The worrier in me is unconvinced but has basically run out of arguments. The strong, brave, self-confident me starts to re-emerge.

“Of course, you’re right. What was I thinking?” I say, relief starting to flow back into me like light into my dark tunnel of despair. (It’s a bit of a merry-go-round in here.)

Now I’m feeling silly. I actually indulged this worry for two days!

“You know”, I add, he’s eating well and has tons of energy, and loves school…” My friend is smiling, she has won this battle.

I think of Elliot at school. Then a thought. Just a glimmer, at first, then it works its way into the front of my mind… The other day at school I was watching him running around outside during recess and I noticed that he doesn’t run as fast as most of the other kids!

Panic!

I mention this as casually as possible to my friend.

“He’s been basically inactive for a year.” She says. “And didn’t you say one of the chemo drugs affects his nerves and reflexes and that it would take time to recover?”

I am hearing her, but the other part of me is aching to get on the computer and google “cancer recurrence” and “running speed”… Or maybe “wilms tumour” and “how-fast-do-normal-kids-run”… or maybe…

So here’s the thing. I have decided to put a stop once and for all to these paralyzing worries. I have come up with A Strategy.

The basic concept is this: when I worry, I will classify my worries into one of two categories: productive or un-productive.  The productive category  includes worries that actually can lead to some kind of action: for example, I’m driving and am worried I might run out of gas since the light is blinking, so I drive to a gas station. (This, by the way, rarely happens as Martin seems to have this worry so overwhelmingly under control that our cars are almost never below ¼. Isn’t he great? Or maybe he knows that I am strangely unafraid to take a chance with it, telling myself that “it’s downhill most of the way”?)

The unproductive category would be things that are un-solvable, things that just cause me to continue to analyze, research and ruminate over them without any solution or action being possible. For example, when I consider the possibility that the team of oncologists and specialists overseeing Elliot’s case might, during their weekly patient review meetings, be laughing and tossing the dice to determine which chemo to give Elliot this week.  It is, after all, not much use to worry about whether the last oncologist we saw, who has over 30 years of experience in this field, might not quite have as much information about Elliot’s cancer as my google searches have given me. At some point, I just have to decide to trust these guys. Trust them with my little boy’s life.

So there you have it: my Anti-Worry Strategy. I’ll let you know how it goes.  Perhaps as an additional tactic I should get google to ban me from too many searches, the way casinos ban gambling addicts?

A Week on the Roller Coaster

I have so little free time these days that I have started writing several times, and not had time to finish. So here are a few tidbits from the past week, a glimpse into my life as a cancer-mom, written on the run as I juggle parenting three kids, working, spending time with my out of town guests, and anxiously awaiting Elliot’s CT scan results this week…

Elliot’s first time on his bike!

Monday.

Here in Opposite World, the situation is as follows :

My son, age 5, stage 4 cancer of the kidney, having had surgery, radiotherapy and 10 months of chemotherapy, is jumping on the sofa, bouncing off the walls and saying he wants to go outside to play.

My mom, age mumble mumble, stage 4 cancer of the small intestine (GIST), two surgeries and 11 years on targeted therapy anti cancer drugs, and just flew 4000 miles a few days ago to visit me, time zone difference: 6 hours, has just finished checking facebook and her emails, playing with Elliot, doing laundry and is saying she wants to go outside to play (play=shopping).

Me: age a couple decades less than mumble mumble, stage 4 lack of coffee, no surgeries ever although I did give birth three times in my life so that should count, no chemotherapy although am sure I suffer from chemo brain by osmosis, no radiotherapy, ok there’s simply nothing medically wrong with me but I’m exhausted!!!

Seriously, somebody told these cancer people to “seize the day” and they are! If any more day-seizing happens around here I’m going to have to start mainlining coffee.

 

Tuesday

I have a day off from work, and Martin too! We usually work opposite shifts, so that someone is always there for Elliot. But this has not allowed me to spend much time with my mom and sister since their arrival, without Elliot along. Shopping with Elliot is…uh… challenging. Imagine bringing a talking kangaroo along into a changing room as you try on a new dress. You know, one of those changing rooms where it’s just a curtain that separates you from the rest of the world? You get the picture.

So today Martin will stay home with Elliot while my mom, Julie and I head off on an adventure! We are driving to Montreux, about 45 minutes away.

The weather is perfect. The drive is amazing, the highway is perched of the edge of rolling cliffs covered in vines that cascade steeply down to the lake. The sharp sunshine reflects off the water and highlights the towering mountains on the other side. In Montreux we park and stroll along the quiet waterfront which is still recovering from last week’s jazz festival. I can almost see the smoke on the water. This is where the Rich and Famous live. Shania Twain owns a castle somewhere nearby apparently. The sun shines and I feel, for a brief moment, that I’ve escaped the cancer world. There is a lingering stress that I can’t shake though. Tomorrow we get the results from Elliot’s end-of-treatment CT scan, and although we’ve been told it should be ok, there is always that lingering “what-if”. Cancer is an unpredictable enemy.

I find the perfect dress. There is a minor problem in that the price has one more zero on it than I would like. Oh well, I leave it for Shania.

 

Wednesday

We’re at the hospital, in the waiting room. I dropped my mom and Julie at the airport a few hours earlier, heading home. They are somewhere over the Atlantic right now. Elliot is playing with a toy. Martin is looking at his phone. I am pacing. The stress has formed a hard lump in my stomach. I can hear my heart beating in my ears, and am trying to control my breathing by taking deep, slow breaths. I feel like I might cry at any moment, even though nothing bad has happened… yet. This moment marks the culmination of ten months of anxiety, ever since this all began.

The nurse comes and tells us we can wait in the doctor’s office. I analyze her face. Does she look calm? Anxious? Upset? Pitying? Sad? Glad? I can’t tell. SHE knows the scan results. I almost feel like begging her just to tell me. But I’m too afraid of the answer.

We sit at the doctor’s desk, waiting for him to come in. Elliot is on Martin’s lap, playing with his toy. I have my notebook out with my list of questions. My hand holds the pen, and is damp with sweat. I feel cold.

The nurse comes in and sits at a chair by the side, also with a notebook and pen, ready to take notes during the meeting. Is this a good sign? A bad sign? Any kind of sign?

The doctor comes in. He’s holding Elliot’s file. He sits opposite us, says hello, and smiles.

The smile says it all. I know it’s going to be good. I feel the stress leave my body like steam out a boiling kettle.

The scan is clear. Of the “innumerable” lung metastases at the beginning (yep, that means, too many to actually count) there is not a trace left. Elliot is definitely in remission and the treatment is finished. We can leave and only come back in three months for the next scan. I think about my mom who has gone through the three month scans for 11 years. We walk out of the hospital quickly, not looking back, almost hurrying like kids leaving school early, afraid to get caught and called back in.

 

Thursday

I’m at work, early shift. All my co-workers know about yesterday’s scan. They keep coming up to me to congratulate me. They look as relieved as I feel. I think about how cancer affects everyone, not just the one with the diagnosis. It must be so hard to just sit on the sidelines and not be able to do anything. And some have silently fought their own battles, watched their own family or close friends go through this. You only find out about this after you enter the cancer world.

I feel a freedom I haven’t felt in months. Well, 10 months and 10 days, to be precise, since Elliot was diagnosed. It’s like nothing can get me down today, nothing can go wrong, I’m riding around on a cloud.

Work is busy, but fun. One of those days where time flies.

After work I take Elliot, my teenager Daniel, his girlfriend and her mom out to a movie. It’s Elliot’s first time at a cinema. He loves it but talks and laughs loudly during the movie. It doesn’t bother me because that’s what the other young kids are doing too. We’re normal!

We decide to go out for supper, and get home around 8pm, already bedtime for Elliot. Exhaustion is silently creeping up on me. As I unlock the door to our apartment I hear the music blasting from Jesse’s room (oldest son, age 20). He’s in there hanging out with a couple friends. I stomp in to his room and pull the plug from the wall. Three sets of surprised eyes stare at me. I stomp away. Fatigue comes crashing down on me, and an overwhelming irritation, which is completely illogical, I tell myself, given the circumstances. I get Elliot ready for bed impatiently. Jesse and his friends quietly leave, Jesse quickly saying goodbye while staring at me like I’ve grown a second head.

I read Elliot two bedtime stories, both of which I find extremely annoying. I am angry at princes and dragons.

Elliot wants an extra cuddle before falling asleep and complains that his dad is not there (Martin has the late shift at work).

I fall asleep first, I think.

 

Friday

 

Even earlier morning shift. Driving to work when it is still dark out on a summer day. The highway in to Geneva passes the Paléo festival site, a huge outdoor week-long music festival with thousands of tents set up for the fans who stay all week. Three young men have climbed to the top of the fence that separates the camp ground from the highway and are hanging there, waving at the few passing cars, laughing. I try to see if any of them is Jesse, but am pretty sure none of them are. Who knows.  I am starting my morning and they are ending their evening. Time is strange.

I get home from work at 2pm, enough time to have an hour with Martin before he leaves for work. He looks exhausted. Elliot woke up at 610am. Martin worked till 11pm last night, and will again tonight. He drops a fork on the floor and actually growls at it. Elliot and I look at him like he’s grown a second head.

Elliot complains again at bedtime that his dad is not there, but then I remind him that after today is vacation, we have three weeks off work, and we will be together every day. He asks if three weeks is kind of the same as a million days. I say yes.

Now our home is quiet. Daniel is out with his girlfriend. Jesse is still out. Oh, don’t worry, he’ll come home at some point. I used to worry about Jesse a lot, but he’s ok. Oh sure, he’s probably out there doing backflips off of tall structures but hey, it’s not cancer, right? Sigh. Jesse has become one of the best Traceurs in the world. Don’t know what a Traceur is? Check this out, and then tell me if you thought I already had enough stress with Elliot!  And Daniel is doing this too, he’s quite amazing as well. Why couldn’t they all have taken up the violin? Ok I admit, the truth is, I’m totally impressed with my kids.

While the house is quiet, I do a bit of travel planning. Since we couldn’t plan anything ahead of time, we have decided to drive to Paris and spend a few days there, and then on a beach in Normandy. We have not gone away on vacation for a year. I am so excited about this trip! I almost wish I had bought the Montreux dress, so I could walk around in Paris looking fabulous and sophisticated.

Elliot’s main interest in Paris is to go up the Eiffel Tower. He has seen pictures of it and talked about it a lot, it’s the main reason we chose Paris for this vacation. Oh, and by the way, he INSISTS we have to walk up the stairs. There are 1665 steps to the top. So, anyone want to take bets on where we all collapse, or who cracks first?

I try to find a few other activities we could all enjoy in Paris. It’s not that simple, we still need to avoid places where there are lots of kids. Chemo wipes out your previous immunity, and there is still a chicken pox epidemic here in Europe, where no one gets vaccinated against it. It could be very serious if Elliot catches it, but he can only be re-vaccinated six months post-chemo.

I get a message from a friend saying congratulations on the scan, and that she is happy all this is behind us now. I feel the irony. I decide not to think too much about the next scan in three months, or in six months, or the fact that he’ll have regular scans for years and that there are no guarantees.

Martin gets home just before 11pm. It’s official! We’re on vacation! We now have one million days together.

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.