Category Archives: Uncategorized

Lie to protect the innocent bystanders ?

8 Mar

The other day I had an interesting conversation with my piano teacher. Note to the critics: yeah, I’m taking piano lessons! Surprised? It’s my new hobby!

I had not had a lot of time to practice during the last week so my performance was less than stellar. And my normal performance being already less than stellar, this meant that my performance was actually, uh, uberstellarless. For those who don’t speak German that means really not so great.

She didn’t seem to mind (I am sure it’s because she sees in the depths of my soul the incredible talent lying in wait there that just needs to be nurtured into bloom) but did ask what had kept me so busy during the last week.

And this brought up the Whole Cancer Thing. Because the problem is, I hadn’t told her about it. I ‘ve only known her for about a month, and although we’ve chatted about our personal lives a bit, it has stayed mostly on surface issues like where we live and where we work.

And it’s not that I don’t want to tell her. It’s actually just that I want to protect her from having to deal with it. It’s awkward. She’s an innocent bystander, and I don’t feel like having her sit there with huge eyes as I chuckle and say: “Oh you know, just busy with regular stuff like work and errands and a complicated  hospital appointment for my cancer kid…”

So what do you say? I have actually avoided talking about my kids altogether in some cases. Like, I was out with a bunch of local expat moms not too long ago, many of whom I had not met before. This was right in the middle of Elliot’s treatment. It was actually impossible to talk to another mom without the subject of our kids coming up. I felt like I was juggling forks, the way I kept having to change the subject (how do I come up with metaphors like that, by the way? Does it only make sense in my brain, or do you see it too?)

Finally, after diverting the subject back to her kids several times, and giving vague answers like “yes my son normally goes to the local public school” I finally felt I was getting backed into a corner. I was surrounded by 4 or 5 other moms and the subject of the chicken pox vaccine was being debated, and I was asked directly if I had vaccinated Elliot or if he had already had it.

Now, Elliot had chicken pox. It was a few months before the cancer diagnosis. And, well, chemo treatment erases previously acquired immunities. And chicken pox is very dangerous during chemo treatment, the virus can be amplified by some of the chemo drugs he got, and turn deadly. So chicken pox is a particularly sensitive subject to most cancermoms. To normal moms, it’s chicken pox. Itchy spots. A heartfelt debate about the merits of vaccinating versus naturally acquired immunity. Pox parties. These are normal mom conversations. I used to have these types of talks before. But now I just stand there, and when someone turns to me and asks me… I hesitated.

Do you lie to protect the people from a subject you know they don’t really want to talk about?

“Yes, my son had chicken pox when he was 4. What a week! Ha ha. “ Smile and move away, grab another champagne flute.

“Oh I didn’t practice piano because my kids and work kept me busy. Ha ha.” Smile and plink away. (No champagne flutes during piano lessons, darn it, probably would help my piano teacher not have that look on her face while I’m playing like her shoes are on too tight.)

Or do you just answer the damn question?

“Well, Elliot had chicken pox. But since he has CANCER, he now bah blah blah…” It doesn’t matter what you say after this because everyone is now frozen with fear because you said the word CANCER. They have all taken a small step away from you and are clutching their flutes. (We’re still talking champagne here, not musical instruments, although it did conjure a new metaphor that ended up so complex I thought better to drop it.)

I know people who are just casual acquaintances don’t deserve to have their heart sink into their shoes on a nice evening out with friends just because I answered a question. But I also feel stupid and phony when I deliberately pretend I am someone I’m not. I’m a cancer mom, like it or not.

So what’s the solution? I welcome your replies. (The flute subject is open for discussion too if you want).

In the meantime, since I couldn’t find a stock photo of an innocent bystander juggling forks (which would have been the most appropriate for this post), here’s a photo of Elliot in his new soccer outfit! Not sure why the peace sign, but ok.

Posted in Uncategorized, cancer, funny moments | Tagged , | 2 Comments

Feelings

9 Oct

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.

Posted in Fear, Feelings, Uncategorized, cancer, hope | Tagged , | 2 Comments

Parenting Through Cancer

31 Aug

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.

My favourite super hero

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…

Any advice for parenting through cancer? Opinions? What worked for you?

Posted in Uncategorized, cancer, family, kids | Tagged , , | 1 Comment

Vacation

7 Aug

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.

Oh well. We’ll always have Paris.

Posted in Uncategorized, Vacation, cancer, funny moments, kids | Tagged , , | 2 Comments