Today we get the results of Elliot’s scan. He is acting normal, except for what is probably some hayfever, runny nose, coughing and light asthma. The coughing and asthma always worry me, because what we will find out today, basically, is whether there are any lungs metastases.
We went in for all the tests on Monday, and get the results today on Wednesday. It’s always like that, every three months. So the Tuesday in between is a bit of a write-off, although Martin and I are getting so much better at coping.
And yesterday, our stressful Tuesday, the big news you read about everywhere was the Boston Marathon explosions. I read about it in shock yesterday and again this morning, as I sit in my quiet kitchen waiting for the minutes to go by till we leave for the hospital. I read a bit more about it, about the young boy, 8 years old, who died.
My first reaction was to feel: I can’t think about this, I don’t even want to know, especially today, it’s just too much for me to handle . My stress level is already high enough right now, I feel I might crack from the anxiety of this wait.
But I read it anyway. I lived for years in Halifax, and Halifax has a special tie with Boston because of the help the Bostonians provided after the Halifax explosion of 1917. This is a strong link that the rest of the world may not know about. Every year, since 1917, Halifax sends down one of the biggest Christmas trees as a gift of thanks to Boston. The tree is Boston’s official Christmas tree and is lit on Boston Common throughout the holiday season .
But anyway I’m sitting here, the stress building inside me like steam in a kettle, the minutes slowly ticking by till we can head in to our appointment with Elliot’s oncologist, who will tell us if Elliot might have relapsed. I always tend to feel the unfairness of our situation in moments like these, like, why were WE chosen to have to go through this, why us, why Elliot, it’s not fair.
And I think of that little 8 year old boy, in Boston, who was standing with his family at the finish line, at exactly precisely the wrong place at the wrong time, smiling as he saw his dad running up, happy.
And my 6 year old, Elliot, who probably hasn’t relapsed, but may have, and we’ll know that soon.
And you know what? Suddenly I realize that although cancer sucks, and let me tell you it sucks so bad sometimes it aches, at least Elliot has a chance. Even if he relapses, he has a chance of fighting it. He has a chance of having some more time with us, us with him, enjoying life. Enjoying the time we have together, no matter how long or short it is.
That little 8 year old didn’t get that chance. His life went from one moment of shining bright joy to nothing, in a flash.
So I guess today I should consider myself lucky. I’m going in to the hospital with my little boy who is now 9 months post treatment of a stage 4 pediatric cancer. And I’m lucky.
I think we should all see ourselves as lucky today, no matter what. Let’s make that our goal today: notice how lucky you are. And enjoy.
Times’ up. We have to get going to the appointment now. Deep breath.
Lately, a few friends of mine have mentioned that they are feeling down. Life sometimes takes a strange, unexpected turn, and you are thrown off balance, wondering what you did to deserve this.
It doesn’t help that it’s grey and raining out, every day for the last week has been hidden from the sun. All of us are just walking around in the pale grey light like ghosts floating amidst shadows, everything around us is coated in milky cloudy colors.
Days like these blend into each other, if someone asks you later what you did last Tuesday you can’t remember the difference between Tuesday and Wednesday. Maybe there was none.
Do you ever look back at how you were as a teenager, and wish you could warn that person? Or at least, give her a hint? I do. I sometimes think about her and feel like…she has no idea yet! She still thinks she’s going to meet the love of her life next year, get married in a castle and have several perfect kids, have a meaningful career that makes a difference, have a close circle of friends that are funny and cool (probably called Phoebe, Monica and Rachel, or something like that) and live an exciting life of adventure and meaning, leaving a mark on the world when she finally passes away at an old age, her many admirers gathering to have a huge party celebrating her life.
Where and when did that plan start to derail? Was it a slow process, a gradual silent shifting of gears, or a sudden, quick flash of lightning in her face, blinding her with its bright white light, leaving her forced to feel her way with her hands outstretched, guessing at where she was going?
And most importantly, was it meant to be like this?
I found a photo of Elliot recently. It was taken while on holiday in Denmark, about 6 weeks before his diagnosis. He is standing on the beach, his feet under water, a huge smile on his face. We had taken off his wet clothing, so he’s just in his little underwear, no shame of course at age 4, his arms held high as he waves at the sun.
If I look really closely at the photo, I can see the bump on the lower right side of his abdomen. The bump that turned out to be a tumour. The tumour that was cancerous. The cancer that spread to his lungs, making it stage 4.
What if I had noticed it back then? Would six weeks have meant it would not have metastasized yet? Would it have made a difference? But no, there’s no turning back time, I can’t go back and spot the bump earlier.
But what if I hadn’t found it when I did? What if I hadn’t noticed even 6 weeks later?
These questions could haunt me. But strangely enough, I don’t bother with them much. I know it serves no purpose to analyze all the “ what ifs”.
But I do wonder about whether or not this path in our life was meant to be, or whether we have any control over our destinies.
I like to think I have some control. Oh who am I kidding, I’m a total control freak. I secretly semi-consciously believe I am the best at everything important. (Note to the critics: putting gas in the car is not on my “important” list).
So it’s hard to let go, and accept that not everything is within my control…
I suppose that makes me Monica. Hey, which one of my friends right now is SURE she’s Rachel??
So at times like these when some of my friends are feeling a bit down, I feel I should be able to “fix it”. Monica can do anything! She can clean the apartment and bake twelve lasagnas and analyze her friend’s love life and drink coffee and look fabulous all at the same time. And she’s only mildly annoying as she’s doing it all. So why can’t I fix all the world’s problems, or at least all my friends’?
Well, I guess maybe, just maybe, I have to admit… some problems are actually out of my control… For one thing, I can’t stop the rain. Hey that should be a song.
And what about all my other dreams? I did meet Prince Charming eventually; it just took me a few decades longer than expected. We got married at the city hall… a building potentially old enough to qualify as a castle in my books… My kids are truly perfect (ok maybe it would be nice if I didn’t cringe every time I had to enter their bathroom…) My life is certainly exciting and meaningful, although most cancermoms would agree with me that a little less excitement could be nice…Hmmmm. Am I actually the victim of my own wishes? Isn’t there an old Chinese proverb that says “be careful what you wish for, it might come true?”
Is my life a milder version of that old suspense story by W.W. Jacobs, The Monkey’s Paw, where a person’s wishes are granted, but with unexpected consequences? Is life just a series of random acts, or does everything you do and think affect something else?
What’s that thing about the butterfly making enough wind with its wings to cause a cyclone in another part of the world?
A friend’s daughter recently just finished her treatment for leukemia. For those not in the cancer world, or at least not the leukemia world, treatment for the most common leukemia (ALL) takes roughly two and half years for a girl (longer for boys). This is a huge part of your life, not to mention your child’s life! In fact, my friend’s daughter has spent more time in treatment than not. To say that this was a difficult time is not even close to being able to describe what leukemia parents and kids go through. I thought that the 10 months of Elliot’s treatment was interminable, imagine years. And because of the long treatment cycle, immunity is often low for long periods of time, so the kids are often restricted in what activities they can participate in. Many miss out on school, friends, parties, outdoor activities, events, in fact, anywhere there might be a risk of catching something… The family lives in a bubble, in an “alternate reality”.
And that’s when things go well.
Often, despite all these precautions, a leukemia kid will still catch some virus, bacteria or fungus. You know, there are fungi called aspergillosis, I looked this up because I was curious what the risk was to Elliot when he was in treatment… They just float around in the air, everywhere. You can’t escape it, only normal people living outside of the alternate reality of cancer, have immune systems that just deal with those little buggers and destroy them right away. But for leukemia kids, these little beings are just waiting for their chance… In fact, one of the leading causes of serious infection during treatment is called “opportunistic infection”, it means there are creatures out there in the world, little germs, just hovering in the air waiting for an opportunity…
But wait! She made it through the treatment. She made it through a variety of infections and reactions and long term hospitalizations, and the treatment and side effects and got to the last day of chemo. (Actually, she jump-started the last day of chemo by cleverly getting so sick from one of the heavier treatments a couple weeks before the end of chemo date, so that they finally decided to just not even give her that last pill. Clever girl.)
And the parents breathed a huge sigh of relief!! And the family and friends and everyone who had followed her story cheered! They signed her up for school, to start the day after the Easter holidays. Hurray!! Life would get back to “normal” after years, they would be allowed to leave the alternate reality!
Then the family went skiing…
Is it irony? Is it almost tragi-comedy? Is it enough to make you scream out loud?
She broke her leg skiing. Three days before starting school.
The type of thing that when you hear about it, you literally don’t know if you should laugh or cry. Maybe you should do both.
On the one hand, how incredibly incredibly frustrating to go through all that treatment and just before normal life starts you are back in the hospital world.
On the other hand, how normal… How incredibly nice and normal to be at the hospital with a kid who broke her leg skiing… That’s a “normal kid” problem!! People outside the cancer world can maybe not quite understand this but… She was skiing!!!!! The little girl who just a few months ago was battling a fungi attack in her lungs! The little girl who probably knows various chemo regimens by name, who can most likely tell you the exact dose of methotrexate it would take to make her puke!
When I got the news I felt just awful for my friend, who once again had to rush to the hospital with a hurt child. My friend who felt guilt, because moms always feel guilt even if it’s not our fault, because somehow we think we should be able to prevent any bad thing from happening, especially to a child who has endured more than her fair share of bad things.
But at the same time, I also felt a strange feeling of gratitude and pride. Because she was skiing. She was being normal.
And after all, isn’t that what we want most for our child? To be able to live life to the fullest, take risks, fall and get back up again (with a cast maybe), be happy?
Ok guys. (And girls. Oh who am I kidding, mostly girls.). It’s time to talk about something serious for once. Something tragic and heart-wrenching and life-altering and emotionally exhausting and physically overwhelming.
I am talking, of course, about the very sensitive subject of… parenting teenagers. (What?? What did you think I was going to talk about??)
I am almost done with parenting my second child through adolescence. No, no, that sentence should in no way be read to imply that I am almost done parenting. It’s just the adolescence part that ends soon. My second child is turning 18 in a few months. And as we all know, the magical thing that happens after adolescence is that your child has matured into a responsible adult and leaves home the day after he turns 18, shaking your hand on the way out the door and saying “Good job, mother, I’ll be on my way to my Fully Planned Out Well Balanced Life now. Thanks so much for all your hard work, I will of course reward you for all your sacrifices by keeping in touch on a regular basis, having meaningful conversations with you when we meet for coffee every week so that I can tell you everything that’s going on in my Wonderful Successful Life, and thanking you in my acceptance speech when I receive my Nobel Prize or Academy Award.”
But since we are still a few months off before all that happens, I would like to share a few thoughts on the parenting experience as it pertains to the ages of 12 to 18.
For those of you who still have kids younger than this age group, don’t worry, it’s really not that bad. For those of you who have kids past this age group, get up off the floor, it’s not polite to roll around laughing like that. Yeah, yeah, we know it really actually IS that bad, but there’s not much point telling them, is there? It’s not like they can change anything about it, it’s too late now. And besides, they are still in that phase where they think “It won’t happen to me. I have a connection with my kids. I have a plan. I have read parenting books, taken a class, thought it over, talked to the Dalai Lama and well, I just know it will be different for me!”
Come on now, up off that floor! It’s just rude. Let them have their dreams. There’s plenty of time for the “I told you so”s later.
There’s really only one foolproof way to make sure you don’t struggle through the teenage years as a parent… Don’t have kids. But if you are reading this, chances are you have already created a little bundle of joy, maybe even more than one, and he or she is running around right now being cute and cuddly and asking “but why?” a million times and you think the worst of your struggles are the middle of the night nightmares, the stomach flu and the constant interruptions until you get used to repeating the beginnings of sentences several times.
But no. Well, actually, yes. Middle of the night nightmares with teenagers: check. Only it’s you having the nightmare, and you’re wide awake, in the middle of the night, standing next to the window, eyes darting back and forth from your mobile phone to the road outside because your teen isn’t home yet. And isn’t answering his phone. And should have been home 20 minutes ago. Which isn’t so bad in the “real world” because people are often 20 minutes late for appointments without the rest of the world getting furious at them, but when it’s your child, it’s different. You are standing there with that wonderful mix of feelings that is a cross between loving them so much you are literally aching to see them walk around the corner and being so angry you will probably ground them until three weeks after they turn 30.
Stomach flu with a young child compares nicely with that moment when one of your kids’ friends brings him home drunk. ‘Nuff said. And you thank the friend for having the presence of mind and decency to get him home. And the next day you find out it was the friend who brought the booze.
Constant interruptions? Slightly different twist to that one. Conversation with teen:
I walk into his room and say “Is tomorrow the day of your math test?”
Teen, looking at his computer. “Hahahahahaha. “ Looks at me: “What?”
Me: “Have you studied for your math test?”
Teen, looks at me: “Math test?” Looks back at his computer, which has beeped 3 times. Says “Yeah right!” to it and types something very quickly. Looks back at me with a blank expression.
Me: “Don’t you have a math test tomorrow?”
Teen, having picked up his mobile phone and reading something. Holds up one finger and says: “Just one….” And texts quickly while looking serious. Then looks up and stares at me with a blank expression.
Me: “Seriously, are you ready for your math test?”
Teen, puts down his phone and replies to the beeping computer while mumbling.
Me: “I found 50 dollars, would you like it?”
Teen, stand up, faces me, fully focused, at attention, staring directly into my eyes: “Really? Are you serious?”
Me: “No, now what about math??”
Teen: “What math?”
So you see, it’s not really that bad.
On the plus side my son recently made a Spotify list on his account entitled “Songs Mom Might Like”. For those of you who don’t have teens yet, that is an enormous compliment. It means my son thinks I might have taste, or at least i could be influenced to have taste, and especially, he thinks I have enough computer savvy to use Spotify! It doesn’t get much better than that!!
Remember my valiantstory about undertaking my incredibly long and difficult marathon last year? Yeah, I know it has been pointed out to me that a “marathon” is officially 42.195kms therefore I should not have called mine a marathon at all. By that same token Terry Fox should not have called his the Marathon of Hope, since his was way way WAY too long to qualify as a marathon. So there, if Terry Fox can cheat on semantics, so can I.
Well, I finished my marathing (Ha! New word!) in record time (ok it took me two hours and I was aching for 5 days after) and raised over 3000 francs for childhood cancer research. Not bad eh? I felt pretty proud of myself.
Right after the marathing, we were all served hot pumpkin soup (which tasted like a small miracle to me after my 11km hike through the frozen wilderness) and I chatted with some of the other participants. One of them was Zoé’s aunt, Patricia. Zoé is a little girl Elliot and I have met along the way, who has battled neuroblastoma three times.
That’s the funny thing about my adventures in Cancerland – just when I start to feel like my situation is special in some way, someone else comes along to show me I aint seen nothin yet… The year we spent battling cancer alongside our 4 year old was the hardest, most painful, most frightening thing I have ever experienced. Zoé and her family did it… THREE TIMES.
The 11 km trek through the frozen rain was physically exhausting and emotionally challenging – I felt like quitting at least once. (Oh who am I kidding, I felt like quitting within the first 15 minutes when a cheerful bearded man who looked to be about age 70 passed me, and then roughly every 10 minutes after that, as I kept trying to catch up to him and failing.)
Well, Zoé’s aunt Patricia was participating that day for another reason… For practice. Yep, this little 11km was nothing but a trial run! She and two friends, Sophie and Sarah, had signed up for an incredible adventure in support of childhood cancer research, one that made my little 11km seem like a stroll in the park.
The Amazon Green Tree Raid is a 7 day competition in Mauritius, for women only, requiring intense physical and mental stamina to complete difficult events in exotic natural settings, using only, as their website claims “no motors, just sweat”. Zoé’s aunt and her two friends had no special training when they signed up, just the will to be part of an incredible adventure that also might lead to some funds being raised that they could give to childhood cancer research. They named their team: Sun à ma Zoé.
In order to get ready for this event, Sophie, Patricia and Sarah spent the year training for all the different daily challenges they would encounter: they entered 10 races of various lengths, and types, including a biathlon and a bike race. They also had to learn and become very good at mountain biking, canoeing, archery, rock climbing, weight lifting, and orienteering races, some of which they had never tried before. They dealt with bruises and black eyes, injured arms and sprained ankles. They persisted, and the money started flowing in. Sponsors got interested in supporting the team. People signed up to follow their adventures on their website and theirfacebook page.
A few weeks after our marathing, they flew off to Mauritius. We all watched from a distance, tuning into theirwebsite to let us know how they were doing. In a way, they carried not only our hopes for a cure, but also our dreams of adventure. The videothat sums up the event is an amazing compilation.
I like the Ethiopian saying “When spider webs unite, they can tie up a lion”. In this case, the lion is cancer. OK yeah, I guess that makes us all spiders, which is kind of creepy, but my point is, all of us working together can actually make a true difference. Childhood cancer research is still hugely underfunded. Families confronted with a child’s cancer diagnosis have major problems to overcome, not just the cancer and treatment: unpaid time off work or job loss, childcare and help for the other kids, juggling all the everyday concerns while also rushing back and forth to the hospital, many times in an emergency. The 80% cure rate we hear about sounds great until it’s your kid and you realize that what that means is that out of every 5 kids diagnosed, one doesn’t make it. For those who survive, 2/3 will face permanent and serious side effects of treatment. There’s so much more we the little spiders need to do.
On January 18th 2013 the Sun à ma Zoé team presented a cheque to Zoé and Elliot’s oncologist, Dr. Beck, who is also the president of the foundation FORCE, dedicated to childhood cancer research projects. The team had hoped to raise 10,000chf, but were unsure whether the support and public interest would be there. The total amount raised? 23,225chf! An incredible achievement by three women who dared to take on a challenge.
What new adventure is waiting for us just around the corner? Will Zoé’s mom and I decide to climb Mount Everest to raise money and awareness? (She is rolling on the floor laughing after reading that.The odds of seeing the two of us anywhere near such a huge challenge are about the same odds of a scintigraphy machine showing a false-positive… Hey, wait a minute…)
Here’s an exact, unedited copy of a text message I received at work from my husband the other morning about how my older kids spent their evening the night before: “Apparently Daniel, Jesse and his friend stayed up really late, playing dare. So Jesse has no longer any eye brows. Daniel took a shower with his clothes on and the other dude ate a banana peel and drank tabasco right from the bottle… Daniel is up and told me…”
I laughed so hard I almost couldn’t talk for a few minutes.
The thing is, at our place, we cut the wifi internet at midnight. The theory is that reasonable people should be going to bed at that time. What really happens is that they generally find other things to do to entertain themselves. This is fine, it’s good clean fun, right? They play board games and cards, talk, sit around the kitchen table eating snacks, and generally have a great time together instead of being in their own separate bedrooms staring at a screen, sending messages to friends saying “whatcha doing?” and getting the reply “not much, you?” from everyone. So we feel it’s a good rule. Besides, now that school has started, fatigue creeps up on them a bit earlier and they actually do go to bed at a, uh, more or less reasonable time.
But here’s the thing: it’s actually way way WAY harder to parent this way. The kids don’t realize this. They think we are chuckling to ourselves in bed as we turn off the internet, enjoying the torture we put them through by cutting them off from the joys of youtube and facebook.
The truth is that it would be roughly one million times easier to just leave the internet on and let them sit like quiet zombies in their rooms.
They would make less noise while we sleep.
They would eat less food and leave fewer crumbs on the counters.
They would quit complaining that we are the only parents in the world who inflict such cruel and unusual punishment on their innocent kids.
They would still have eyebrows.
But no, we are mean parents, and so they are left with little choice but to drink tabasco.
Parenting is hard enough under normal circumstances (sidebar here, are there actually any “normal” parenting circumstances? It seems to me, in my parenting career, which spans almost 21 years (ack!) that the normal periods have been almost non-existent. But I digress.) So what happens when the circumstances change, when an unwelcome guest named cancer arrives in your home, when life is turned upside down and you struggle to get yourself through the day, let alone try to impart some parenting wisdom on your kids? When life becomes a matter of survival, all the rules go right out the window.
Back when Elliot was going through chemo treatment (love the fact that I can say “back when”… it’s really not so long ago!), we were happy when he ate, never mind any nutrition rules. Jesse and Daniel never said a word about it, but I am sure they would come out into the living room for lunch and see Elliot sitting in front of the TV eating a popsicle and think “And we were forced to eat broccoli???”
Not only was it difficult to maintain many of my old parenting expectations with Elliot, but also with the older two. I was just so tired. My kids are expert debaters. Seriously, they should be on some kind of debating team, maybe turn this skill into a future in conflict resolution. I’m pretty sure they would wear down even the worst of the tyrants and bullies out there, if given the chance to have a long conversation with them. The dictator would probably just give up, pack up all his silly guns up in frustration, yell “Fine! Fine! Have democracy! Just stop talking!” and go home. And Elliot is learning this skill too, although he is still in the phase where he just repeats the same thing over and over five million times hoping we’ll crack. So this tactic combined with parenting fatigue can put me over the edge.
So what’s the solution? I think what worked for us was, we chose a few important rules to maintain while going through the cancer treatment, and let the rest go. Elliot could eat whatever he wanted, whenever he wanted, wherever he wanted. But other than popsicles, we didn’t buy junk food. So his choices were usually more or less healthy, even if they were often at strange times.
Finding time together was also an issue, mostly for the older boys. Jesse and Daniel spent way too much time without us, especially when we had overnights at the hospital. But we countered that by planning ahead for weeks when we would all be home, and scheduling movie marathons where we would watch a movie in a series every night after Elliot was in bed, just the four of us together. So we’ve recently had a Harry Potter marathon, a Comedy Night marathon (everyone from Michael Macintyre, Eddy Izzard, Dara O’Briain, to Louis CK and Patton Oswald) and now we’re in the middle of an Avengers series. I’ve basically seen lots of action or crude humour movies this past year, and I can now tell you lots about superheroes (my favourite seems to be the Hulk, which probably says a lot about my choice in men). I am quite familiar with the funniest moments in each Die Hard movie, and have taken part in a debate about whether the next marathon should involve Lethal Weapon , Tron, or Batman. Strangely enough no one is jumping at my idea of historical dramas or romantic comedies. That’s what you get for living in an all-male household.
The point of the movie marathons was togetherness. A shared moment when you come together, even if it’s just to sit next to each other and laugh. And actually, that’s what good parenting comes down to, isn’t it?
By the way, Elliot’s hair has grown in now and he looks just like any other little boy with a crew cut. Jesse’s eyebrows, on the other hand…
So there I was, minding my own business and perfectly content living in Canada with my two kids, finally making ends meet as a single mom. When suddenly, out of the blue, for no apparent reason, a wave of insanity hit and I applied for a job in Switzerland. Actually, it started innocently enough, when a guy at work mentioned that the Swiss were looking for qualified people in my industry, and since I had just gotten my own computer and internet line at home (this was WAY back in 2001, hard to believe I now walk around with this little gadget called an Iphone and check my emails roughly every three seconds), I thought, why not? And popped online, found their website and quickly emailed an application.
Let’s pause here and reflect on that little phrase… «why not?»… How many of us have ended up in some seriously tricky situations (not to mention pregnant) because of that one little phrase? Sure, it all seems innocent at the time… Why not go on a date with that guy at work? Why not try the raw oysters for once? Why not sign up for salsa lessons? Why not buy the fluorescent mini skirt? What could it hurt??? Hahahahaha! (For those of you who believe in God, that was him laughing sarcastically from above. For those of us who are unsure of his presence, that was probably the sound of my own sarcastic laughter, although I won’t admit to it because that would be like admitting that I talk to myself, a sure sign of insanity. Seriously. I don’t. Yes I’m sure.)
So anyway, I applied. On a whim. Then thought nothing of it for a couple months. Life went on. The kids (Jesse age 9 and Daniel age 5) went to school and did their homework and cleaned their rooms and life carried on as normal (some parts of that last statement may be slightly exaggerated). Life was good.
Then, the phone call.
A joyful heavily accented voice says “Bonjour Madame, May I speak with Madame Scobie please?”.
“Madame Scobie, BONJOUR!!” said excitedly, and from this point the conversation continued in French, with Monsieur Anatole DeLestrade enthusiastically speaking so fast I felt out of breath just listening. What I heard: “Switzerland… your application… job interview… available next week?” (This actually took him at least 10 minutes to say, but those are the only words I really heard).
I started to talk only to find I had suddenly turned into a Parisian-accented, hand-waving bubbly free-spirit who agreed to come next week for the interview. He happily hung up after agreeing on the travel details and saying good bye seven different ways.
I walked directly in to the bathroom and looked at myself in the mirror and said to her: Are you insane??? You work next week!!! You have kids next week!!! (This week too but that was a moot point). You have other engagements next week!!! (That was untrue as I hardly ever had time or money to do anything but work and take care of my kids but it had the desired effect of scaring me even more).
And then the craziest thing happened. (Ok I know the whole woman-in-the-mirror talking to herself is already bordering on limited mental health, but bear with me here).
I felt suddenly calm. I took a deep breath. I decided I was going to Switzerland for a job interview. I would get it organized.
Ahhh… the sun on my face, the sand between my toes, the soft wind blowing and the distant noises of kids playing combined with seagulls screaming overhead…. I am sitting in a long chair on a beach in Trouville-Sur-Mer, Normandy, enjoying the sunny day. The weather in Normandy is exactly what people kept telling me it would be: completely unpredictable. This morning was grey and cloudy, and cold. I needed my warmest sweater to go out for a walk. The wind was strong, so much that my hair was always blowing around all over my face like a wild curtain, blocking my view half the time. We considered a picnic on the beach for lunch but eating sand was not appetizing, so we carried our bastognes and salami, cherry tomatoes and baguettes back to our room and ate on our more or less sheltered balcony, overlooking the sea, watching the ships just on the horizon.
We talked about how to dress later for our afternoon on the beach, which was going to happen regardless of the weather. Elliot’s main goal that day was to spend all his time digging in the sand with his cousins.
Then as we sat there, we started to notice that the dark clouds were being swept slowly away toward the east, being replaced by thin white whisps, and then those blew away like dust and the sky cleared. The bright hot sunshine fell down on us. The light seemed brighter than normal to our startled eyes, it reflected off the sea like a million stars.
We grabbed our things, sunscreen, books, beach toys, and ran out the door onto the beach.
The beaches in Normandy are amazing. The tides are so extreme that at low tide you have a huge expanse of white sand, so choosing a spot to set up is no problem. We rented one of the local beach tents that are typical of the beaches there, a brightly coloured round tent, open on one side, where you can have some shelter from the dazzling sun or wind if needed.
So now I’m sitting here on my long chair enjoying the warmth. I open my eyes and look way out to the sea. There are people jumping over the waves, small dark figures against the sun, and every wave flashes with bright sparkling light, then curls into a white foam and flattens as it slowly rolls in.
Yesterday we visited Juno beach, not far from here. It’s where all the Canadian troops landed on June 6th 1944, one of the five beaches that are side by side along this coast, where the D Day landings took place and the liberation of France began. Apparently there were so many ships and smaller boats in the sea, and men and equipment on the beaches that huge traffic jams occurred. Right here, in this sand, where my child runs now, completely oblivious to the literal blood, sweat and tears that were spilled not so many years ago.
Every town hall I have passed in this region flies all of the flags of the Allied countries which liberated Normandy after D Day, so it’s pretty cool to see the Canadian flag everywhere. The Canadian cemetery nearby has over 5000 graves, in a picturesque setting on a green hilltop overlooking the sea. There are fresh flowers recently placed in front of several gravestones.
Each grave has a soldier’s name on it, his unit, and his age. I didn’t see any over 23 years old. I think about the mothers who lost their sons on that day, and the next several days. The telegram arriving at the door. People feared the postman. A telegram was never good news.
It makes me think of receiving CT scan results. The formal piece of paper that reduces your life to a mere statement of facts.
Is it possible I can now relate anything back to cancer, or is war an actual valid comparison?
I haven’t had lots of time to just sit and think on this vacation, we’ve been busy every day. But right now as we sit on the warm beach in the sunshine, Martin and his sister are chatting, Elliot and his three cousins are digging for lost treasure and I can tune out a bit.
The first unit to come ashore lost half it’s men. Their landing had been delayed because of the weather (unpredictable Normandy, time has not changed that), so the tides had risen much more than anticipated. They couldn’t see the hidden mines and obstacles under the water.
I look out to the horizon. The tide is coming in now, the beach has narrowed a bit. I imagine watching 14,000 Canadian soldiers, barely more than teenagers, running toward me, stumbling, falling, crawling their way up the beach carrying heavy equipment, or maybe just carrying hope and fear for their their lives. I wonder if it was cold like this morning, if they shivered in their wet uniforms as they struggled up the sand past the dunes, over the rows of barbed wire and into the fields. Or was the sun out by then, mesmerizingly bright, blinding them as they tried to make out friend from foe? Did any of them have time to notice how beautiful the sea looked, or was it too red?
I get up from my chair and tell Martin I’m heading back to the hotel for a bit. We’re lucky our hotel is basically right off the beach, just across the boardwalk, so we all make lots of trips back and forth during the afternoon. The receptionist at the hotel does not seem to like this much, each time we have to ask for our key, which is one of those big brass things you could use as a paperweight. The hotel is an old historic building, and since I’m engrossed in WWII thoughts I can’t help but wonder what it was like in those times. Did secret French Résistance meetings take place behind closed doors?
I cross the boardwalk, which is littered with Beautiful People, yes, with capital letters. The Parisians are on vacation as of last weekend, and many of them are here. The women sitting at outdoor cafés along the boardwalk all look glamorous, the men all look sophisticated. This despite the constant wind, sometimes gentle, sometimes not, that blows across Normandy.
I take the ancient elevator up to our room, it’s one of those old rickety lifts with the second inner door that closes once you’re inside. There is barely enough room for three people in it, much less all the luggage we arrived with yesterday.
In our room I glance in the mirror to see how close I am to imitating the BPs, and note with regret that the wind has helped me look very similar to a broom. Oh well. I look out our window and see my family out there, enjoying the day. And yet I still also see all the uniforms running. Who stood here on this balcony on that day?
Is cancer like war? A bodily conflict, the chemo and radiotherapy soldiers being sent in to fight off the aggressor, in the hopes a strong strategy and superior numbers will win? The collateral damage is obvious. In France it’s estimated that at least 15 000 French civilians died on D Day, many from the Allied bombings that cleared the way for the troops.
Am I being too dark? Thinking of war, a conflict that is caused by people, and comparing it to cancer, an illness which none of us deliberately engages in? Yeah, maybe I am.
Martin and I both find we are a bit shell-shocked these days, like we are still reeling from the emotional impact of the last year. In some ways I think we were in “survival mode” the whole time, and just powered through because we had no other choice. Now that we have stepped away from the cancer world a bit, we often look at each other and say “Can you believe what we’ve been through?”
So maybe I am a bit melodramatic with the whole war concept, or maybe I’m suffering from a bit of post-traumatic shock… Or most likely both. I have been told I have a flair for the dramatic (not exactly these words were used, but I am going to take it as a compliment.)
Regardless, I do think I could look fabulous in a trench coat and a fedora, tipped slightly at an angle to shield my eyes, secretly running down the quiet cobblestone streets at night, slipping quietly around corners, whispering through a crack in the door to my résistance friends some secret code word to tell them of the imminent invasion so we can all join in. Martin would of course have been part of the Danish Resistance Movement, had we lived in those times, and would have been one of the many Danish heroes who smuggled all the Jewish Danes out of the country by boat into Sweden, making Denmark the only occupied country to have saved almost it’s entire Jewish population. Our heroic saga would end romantically when we part ways at a fog-shrouded airport, both destined for different missions…
Oh who am I kidding? In truth I would probably be hiding in a basement, waiting it out.
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…”
(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…)
When I was just a baby, my older sister Michelle, being at the wise age of 2, decided that I was boring and informed my mother that this whole baby thing had been a bad idea. My mom was probably only slightly tired at the time (after all, she had been given the entire 2 week unpaid maternity leave from work which was all you got back then, and then had had to go back to teaching full time. How could that possibly tire you out?) She responded in a mildly annoyed way (I’m making this part up of course, I have no memory of this but I like to picture it this way): “Well, Michelle, what would you have me do, throw her in the garbage?” To which Michelle crossed her chubby little arms across her chest and dared my mom: “Well, yes, let’s throw the baby out.”
There are differing versions of this story depending on who tells it, but in Michelle’s version I am actually casually tossed into the garbage can, at which point my valiant and righteous sister quickly changes into her superman costume and rescues me. My mom claims she pretended to walk toward the garbage can while holding me and Michelle flipped out and begged her to change her mind.
Regardless of which version is correct, I somehow survived the brutal garbage canning of 1968, and went on to become a normal child (Michelle is snickering as she reads that.)
From that moment on though, Michelle has been rescuing people. I have a relationship crisis: Michelle drives 8 hours to be by my side. My brother Billy’s car accident: Michelle is the first to the hospital. Younger brother Martin needs help out West: Michelle gets on a plane. My mom’s surgeries: Michelle is there day and night. I move across an ocean: Michelle keeps showing up just because I get married or I have a baby or my baby gets cancer.
Ow that last one felt like a glass of cold water in the face. Let me re-group and re-cap: Michelle is the Family Social Worker, who is basically in charge of any Crisis Department. My family regularly has crises, so this keeps her quite busy. Never mind that she has a family of her own and a job… oh yeah, as a social worker.
Billy is the Strong Silent Type. I’m not sure why he’s always described like this because he’s not really that quiet. He did beat my son Jesse at arm wrestling last year, which I would not have bet on even slightly. So I guess that makes him Strong. He was pretty Silent during his coma for a couple months back then after the car accident, so maybe that counts.
Martin is the Black Sheep. This is only because he has dark hair and tans better than the rest of us.
And Julie is the Beautiful Young Princess of the family and gets to do whatever she wants. She will disagree with this when she reads this on her own laptop after watching tv while eating ice cream. Ask Michelle and Billy and I about desserts in our home when we were kids. Go on, just ask.
So why have I regaled you with descriptions of my family? Well, maybe to make you think of yours…
Family is what gets you through a crisis. For many of us, friends and extended family are included in that overall description of “family”. When you are dealt a cancer diagnosis, your family, whatever it’s form, is who shows up and closes ranks around you, a show of defiance in the face of an enemy attack. Together, we can fight off the attacker.
My family is a big one. I have… uh… a few cousins. (Shout out to my cousins here… just how many of us are there? I’ve lost count.) My dad comes from a family of 5 kids. My mom has 10 brothers. Yep, you read that right. And since they are all married and most have kids and most of their kids have kids… Let’s just say I’ve never had a reason to feel alone in the world.
When my grand-maman was still alive (she of the truck-caning incident) we had large family get-togethers, at Christmas, Thanksgiving, Easter, and sometimes just on Sundays, because, well, that’s what you do. But mostly in the summer, we would have the Family Reunion.
A Family Reunion in my family lasts three days. It also takes months of planning and strategizing, throwing together possible scenarios, location, theme, meals, wine to serve etc. To do the strategizing the family has to get together several times throughout the months leading up to summer, and eat and drink and debate anything debatable like the merits of whether to finally hold it out in Vancouver for once against the fact that no one feels like flying out there, and since none of the Vancouver relatives came to the meeting, they get outvoted. (Go on, Onc’Eugene, you know you need to comment on THAT!) It is always finally decided to host it in a location where we can all pitch tents and make campfires and sing songs loudly late into the evening while sitting around the fire, the kids running around behind us in the black starry night. So usually somewhere not far from Ottawa or Montreal. Often it has been at my cousin Louis’ who is not allowed to ever sell his home by the water inAylmer. It’s actually been written into the family bylaws. (Has anyone told him this?)
This year, my family is planning the Family Reunion once again. I am picturing them in their “planning sessions”. They argue and they laugh. The kids who used to run and play in the starry night are grown, and have kids of their own.
I moved away from it all when I moved to Europe, and I miss it. Especially in times of crisis, you need your family around you.
And yet, somehow, magically, my family has managed to support me from across the ocean, throughout our cancer crisis. Cards, gifts, letters, emails. One uncle was so worried that he might miss Elliot’s birthday that he mailed the card priority, costing a small fortune, to show he cared. I have cousins who’s wives keep in touch with me even though we have yet to meet. Elliot feels he is part of one huge, extended family.
There is also my husband Martin’s side of the family who have been there for us right from the beginning, about whom I could write a whole blog article too. (Note to self: write blog about Martin’s family. Enquire through trusted sources (his mom and sister) about amusing anecdotes from his childhood to include in the story. Perhaps the time he was attacked by a monkey? Or that time he shot himself in the eye? There is definitely some material there.)
Cancer. It sucks, it scares, it robs of our innocence and our time together. But it doesn’t define us. Facing Cancer Together… Great name for what this battle is truly about.