About Nic

Canadian mom to three great boys, wife to one great Dane, living in Switzerland. Cancer mom instead of soccer mom, writer, artist.

The Boston Marathon… and feeling lucky

Feeling lucky!

Feeling lucky!

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.

Meaning

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

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

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

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

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She has no idea yet… 🙂

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And that’s when things go well.

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

Sigh.

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

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

Then the family went skiing…

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

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

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

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

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

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

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

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

Maybe that is all the meaning we need.

 

Words of Wisdom

mom

 

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!!

Walking down the quiet hallway.

You never know how strong you are until being strong is the only choice you have...

You never know how strong you are until being strong is the only choice you have…

Sometimes, especially late in the evening like right now, the quiet of our home brings me back to the quiet of the hospital late at night. The haunting echo of my footsteps as I pace up and down the hallways, up and down, trying to walk away from the fear.

The nights when Elliot was in the ICU were the longest, there is no small cot for the parents in there, just a chair next to his bed and a curtain separating you from the next child. His epidural, we found out later, had been wrongly placed so he was in lots of pain, the nurses did their best with morphine injections and other painkillers. Martin and I knew right away we would not be leaving his side, not for one minute. We could not control the fact that he had cancer, but he would not wake up and be alone and in pain, that was one thing we could make sure of. So we divided the nights into shifts, each of us taking turns getting three hours of sleep in a small bedroom at a local student’s residence a block from the hospital and then coming in to replace the other.

These were some of the hardest nights. The hardest days too.  Exhaustion, anxiety, fear, achingly present all the time, all the time.

Some things went wrong. Because of the wrongly inserted epidural needle, Elliot had a neurological reaction to the lidocaine which was sent right up his nerves to his brain, he convulsed and his pupils dilated into different sizes. The doctors didn’t realize it was the epidural, so they told us it was probably a brain tumor and scheduled an emergency MRI. Did I mention these were some of the bad days?

Since the nurses felt the epidural wasn’t helping with pain management, they stopped using it. His eyes went back to normal, and the doctors met in a semi circle around his bed to finally decide it must not be a brain tumor after all. MRI cancelled, and off they go. And we stand there, shaking with relief, with fear, with a “what just happened?” expression as they all head off to the next case.

All day, both of us sitting next to his bed, on the alert in case he woke up in pain, ready to pounce at the little button to call the nurse. All night, tossing and turning in the student dorm, or sitting in the dark ICU next to his bed, shivering, with a thick sheet wrapped around my legs, another around my body, watching the little red lights blink, which mean everything is ok.

And when we were both there and one of us needed to stretch our legs, or at “shift change” in the middle of the night, the long slow walk down the quiet hallways.

Being given bad news, the nurse taking me out of the room to comfort me so that I don’t cry in front of my son. Being given the good news, walking out into the hallway feeling like I’m going to fly to the moon, and seeing another mother who is crying. The nurse comes to her.

The strangest feeling as I sit here tonight in my quiet living room, is that I know there is a child in that bed and a mother pacing that hallway right now, as I sit comfortably at home.

How many other moms have I met since this adventure began? How many other kids? I’m not exactly sure, but some very close friendships have been born out of this bizarre twist in the road my life has taken.  It is such a strange feeling to be glad about the friendships I have made on this trip, and yet to know I would wish this experience on no one.  I have had laugh-out-loud moments with other cancermoms, giggling like teenagers as we talk about some of the strange or ridiculous hospital situations we have been in. I have been in tears with the same moms.

One of the scariest moments for me strangely enough involved another mom’s child. I was on a girl’s trip with some non-cancer friends to Prague, out shopping all day, going to a concert at night. I had been so looking forward to this trip, my first time away for over a year. But anxiety kept eating away at the edge of my mind, I felt I didn’t “belong” in this world. I had changed but the world had stayed the same. I didn’t care as much about buying clothes or gifts, I struggled to let go of the worrying but anxious thoughts clung to me like a heavy blanket wrapped around my shoulders, dragging me down, making every step difficult.  My two good friends, who had flown all the way from Canada to meet up with me, could probably sense it, they have known me for a couple decades now.

Suddenly, a text message, from another mom I know who was at the hospital for a check up for her 4 year old girl. The message is brief. “There’s a long bright spot on the scan. It can only be a relapse.”

I stood reading and re-reading the message, cold Prague air creeping up around my ankles, into my coat, up my spine.

For the first few seconds, I felt nothing, just a strange sharp pain in my stomach. No emotion. There was no reason to expect a relapse in this little girl right now. The treatment had been very successful.  There were no signs, no symptoms. Kind of like… Elliot, when we discovered his cancer. No symptom at all. A perfectly healthy child, running around being normal, and suddenly they tell you he’s at death’s door.

I started to type a message back right away.

I can’t believe it…” No, that feels wrong! Delete.

Are you sure?…” Wrong. Delete. The ache in my stomach is getting worse. My fingers are wrapped tightly around the phone, frozen from the cold.

What did the doctors say?” Stupid question. Delete.

I can’t think of what to write. And the reason I can’t think of what to write is that there is nothing I can write that will fix this.

So I finally just wrote: “I’m here.  I’m crying.” Knowing that was no help at all. And then the tears came, not just for this little girl and her mom, but for all the kids, and for mine, and then for me, who didn’t deserve to have to worry so much about my own child, who should have been able to just enjoy a damn girl’s trip to Prague.

Of course my friends did exactly what friends should do in situations like this, which is wrap their arms around me, take me out for some drinks and desert for supper. (Sidebar: absinthe is very very cool to watch, as the bartender prepares it and pours and burns the sugar on the special metal carved spoon, but it tastes terrible.  Despite the desperate times, we could not drink it, and quickly left the Absinthe bar for a more sophisticated restaurant serving wine and decadent Czech deserts).

My friends, eager to make me feel better, talked it over, and decided that I was probably getting too immersed in the cancer world. I was drowning, worrying about every child, and this was making me unable to see that everything was now ok with mine. We decided I need to start focusing on other things. Get a hobby. Take a class. I agreed, actually starting to feel slightly embarrassed at my little tearful breakdown. It was all so logical. I just needed to distance myself from the cancer world.

But instead of feeling better, I started to feel angry. The wine and desert kept the anger quiet for a while, but it seeped in at some point in the middle of the night. I kept it hidden for most of the next day, since I was travelling back to Geneva, and anyway it’s easy to disguise anger when you’re at the airport and your flight is late, everyone is angry anyway.

Somewhere over western Austria I finally admitted to myself that I had no intentions of focusing on other things. I was angry at this relapse. It didn’t make sense. It was illogical (which cancer is, of course) but things that are illogical bug me.  The girl’s mom and I had texted back and forth a bit and apparently the doctors were mystified too. All the other tests were fine, just this one image that showed a relapse. This cancer was (and still is) just a big bully trying to scare us into admitting defeat. Well, NO, I thought. I’m not hiding from this, I’m not going to pretend it can’t happen to me. It could.

Yes, the logical thing would be to protect myself, to distance myself from any unpleasantness. The truth is, I do that a lot. I can’t watch any movies or tv shows where kids get hurt or die. I stopped reading the newspaper because there’s always a story about some horrific tragedy involving kids. It’s easier to just avoid unpleasant things, isn’t it?

But here’s the thing: I can’t abandon a friend. No matter what. And if it were me, if one day it happens to Elliot, I would not want all my cancer mom friends to run away and hide. I would want them to join forces to support me through this, no matter what. To be there, to join in the fight, to hold hands if things go wrong. To be strong when I can’t.

And strangely enough, once I made this decision, the nagging anxiety I had felt even before the Prague trip lifted. Yes, bad things happen. They happen even when they shouldn’t  and sometimes the unfairness is so bitter you can taste it. But sometimes, good things happen too.  In the middle of the fight for your child’s life you find you have made a friend. In what should be your darkest days you laugh out loud at something silly. In your weakest moment you discover a strength that wasn’t there before.

So there you go. I’m not leaving the cancer world. I DID take up a hobby, completely unrelated to cancer (I’m taking piano lessons! Ack! My piano teacher says the fact that I played piano as a child will help me learn it again… That was before she heard me play the piece I had practiced all week… She smiles a lot, kind of like you do when your shoes are too tight.)

No, instead, I’m going to toughen up. I’m going to face the fact that tragedy happens. I can try to help, try to hope for a miracle for everyone I meet along the way. I can be there, in the same way I would hope someone would be there for me if I needed it. I can stand by my friend and face whatever comes. I can research treatment options if it helps and keep calm and logical because it’s easier to keep the facts clear when it’s not your child. I can feel all the pain and fear but can also keep repeating the most important fact. “the doctor believes they can cure her.”

And the anger? I’ve channeled it. I remember reading that anger is the best emotion to make you take action. Anger is motivating. Anger is fuel. So I’m angry at cancer, and the result is that I’ve decided to stop cancer. Yeah, that’s right. You know, when I put my mind to something, I can be pretty stubborn about it. So there’s a few paths I can take: either I can quit my job and go back to school to study to become a medical researcher, and find a cure for some of the worst childhood cancers. This has the definite disadvantage of a)taking WAY too much time b)requiring me to study and c)losing my salary in the meantime. Not to mention the fact that I want to do something NOW. (Did I mention I have no patience?) So my other option is to find people who already have done all the studying and schooling and all that boring stuff, and support them as they try to find a cure for the worst childhood cancers.

So if you want to know why I’m involved in fundraising, now you know: it’s because I’m too lazy to study. Yeah, I’m often immersed in the cancer world (except for my clearly brilliant moments of piano playing), but it’s a conscious choice.

Being strong all the time when you’re alone is impossible. But if all of us cancermoms, cancerdads, cancerfriends  stand together, our combined strength will be enough.

When spider webs unite.

Remember my valiant story 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. sazcanoe

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 their facebook page.

A few weeks after our marathing, they flew off to Mauritius. We all watched from a distance, tuning into their website 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 video that sums up the event is an amazing compilation.

sazrope

 

sazrun

sazswim

 

 

 

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.

Cheque2

 

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…)

Calendar of Hope Raises Over 16,000 francs!

The Calendar of Hope

The Calendar of Hope

 

The Calendar of Hope has raised over 16,000 francs! The money will be given to the two chosen charities ARFEC and FORCE tomorrow, February 15th, the International Day of Childhood Cancer Awareness. Here is a little video which I made to commemorate the making of the calendar: http://www.youtube.com/watch?v=nXMlzFpM0AQ

Advice to the Newbies

 

newbie

Don’t you wish someone had been there at the beginning to give you some straightforward advice on what you were going to be dealing with ? On what to do? What to expect? Kind of a “what to expect when you’re expecting cancer” kind of book? Well, here is my list of pearls of wisdom, and I call on all my other cancer friends out there to add to it, share their experience to help the newbies entering this world… Please add your comments at the end.

 

  1. First, cry. Then get up, and get strong. Being strong might mean you just get through the day. You have no other choice. Get to work on your new life goal: Cancer Fighter.
  2. Accept any help you are offered (if it truly helps). The help must be no-strings-attached and guilt free.
  3. Speak up. Ask questions. If you don’t understand, ask again. Don’t be afraid of doctors, nurses, technicians, anesthesiologists or hospital clowns. They are there to try and cure this cancer. You deserve to know what’s going on, and to have an active role in it.
  4. Get copies of all the paperwork. Every scan, every test result, every protocol. Write down what your doctor says.
  5. Cry again. Then get back on your feet, get strong, and get back to work.
  6. Not everyone is like me, but I needed to understand as much as possible about the cancer we were dealing with. I wanted to know the treatment plan in detail, the drug names, the side effects.
  7. Accept that your schedule has now become completely unpredictable. This is one of the hardest things to deal with at first. Plans will change. A lot. The treatment dates will change. Your other appointments will have to change to fit. Very few things will remain on a predictable course the way they did before. Go with the flow.  This is a lot easier said than done, I know, but what I’m getting at is: you don’t have a choice. So let go of worrying about controlling the plan.
  8. Take a good long look at your life, and start to eliminate all the extra negatives that are dragging you down. Negative people, negative situations, negative habits. You no longer have any time for this.
  9. Replace the negatives with positives. Encourage positive friendships, people who make you feel good about life. Participate in uplifting activities, from exercise to talking on the phone with a good friend, to girl’s night out, to a romantic dinner for two.
  10. Learn to notice the difference between what matters and what doesn’t. For real. Like, before all this: it rains as you run for the bus and you miss it, and show up at work late with ridiculous hair. Versus now: it rains as you head to the hospital for a scan that will tell you whether the treatment is working or not. The last white blood cell count report was ridiculously low. There are 20 steps from the parking lot to the hospital door and you’ve forgotten an umbrella. Hair is not an issue, as it is non-existent. A man offers to walk with you under his umbrella. This matters.
  11. You guessed it, cry again.  You’re entitled, and if you hold it in, it will be the volcano that explodes when least expected. Then, get up, get strong… You know the routine.
  12. During the hardest moments of treatment, take it one day at a time. This means that you actually just focus on what is going on that day. Take it one hour at a time if necessary. Don’t plan too much for next Friday when you’re still trying to make it through today.
  13. Make a very, very short list of priorities. Something like, rest, nutrition, family, and then, work (yes, you still need financial stability, especially now. But work will come after health for quite a while, and rightly so.)
  14. Once you have the time and energy, make sure you have at least one activity that has nothing to do with cancer. You can’t live in that world all the time. I don’t mean you have to join a weekly Tae Kwon Do class or start Norwegian language lessons, just one thing, on a regular basis, that has nothing to do with cancer.
  15. Don’t dwell too much on how people (friends and family especially) are behaving. You will be surprised at who comes through for you, and who doesn’t. People will show up to help when you had no expectations of them. Others will disappear, much to your surprise and chagrin. Don’t hold it against them too much. People all react in different ways to difficult life events.
  16. Celebrate every victory.
  17. This time, instead of crying, laugh. Laugh and laugh, until you cry. Preferably not alone, as by now I hope you have learned to surround yourself with positive people. Then, get up, get strong…

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

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

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

Good times…

 

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

My Own Little Marathon of Hope

And so the day has come… Yes, you probably knew it would, but it is still a shock to me… So here it is.. I have signed up to participate in… a marathon ! ACK!!! I know what you are thinking… Nicole, you do realize this involves… well exercise???

Yes I do.

Nicole, you repeat (I actually can hear you), you do realize this involves, strenuous exercise, like including the possibility of sweating and gasping for breaths?

Yes, I repeat stoically, I do.

Like, in nature? You continue, in awe at my resilience. Outside?  Braving the possible severe weather conditions and wild animals?

Yes, I say again, my head held high. I will do it for The Cause.

Hey wait a minute. What wild animals? Nature? Who said anything about nature? Oh yeah, they did have a picture of the marathon course on the website and it did look like, well, a narrow trail through the forest with potential hills and valleys…

ACK!!!!! What am I, crazy?

Well yes, maybe I am. But I’m doing it, the FORCEthon, an 11 kilometer marathon organized by the foundation FORCE, our local childhood cancer research and advocacy foundation. (http://www.force-fondation.ch/)

Because all the proceeds my humble run/hike/crawl through the woods, over the hills and valleys, warding off wild beasts etc, go to fund the research that is desperately needed to cure some of the kids Elliot and I have met along our cancer journey.

Hey, don’t look so worried! I can do this! It’s only 11 kilometers, how bad can that be? (What? You say that’s almost 7 miles??? Are you freaking serious???!!!)

I’m Canadian, you forget. We have Terry Fox as a role model, how can we not be moved to reach for the stars when we have a true Canadian hero to guide us?

For those who don’t know him, here is a bit of Canadian history.

Ever wonder where the idea to do a marathon for cancer comes from?

In 1977 Terry Fox was a normal, active 19 year old Canadian kid when a worsening pain in his knee sent him to the doctor. The diagnosis would change his life, his family’s and eventually all of us: osteosarcoma, a serious type of bone cancer.

His leg was amputated. He went through 16 months of intense chemotherapy and was told his chances were 50%.  His hospital experiences had made him angry at how little money was dedicated to cancer research, he watched as others around him lost hope and lost their battles.

One person can make a difference

Terry didn’t give up hope. Although he had an artificial leg which made him run with an unusual gait (find me one Canadian who doesn’t know exactly what he looked like as he ran, I dare you) he decided to embark on an ambitious adventure. A crazy adventure. And adventure that would have him braving the elements and the forces of nature (that’s the Newfies), facing wild beasts (that’s the Quebec drivers), and all kinds of weather.

Terry decided to do a marathon on his own, all by himself, and asked each Canadian to give him a dollar, that he would donate to fund cancer research. Just one dollar. If each of the 24 million Canadians were willing to give just one dollar, he figured, think how much could happen in cancer research.

But the marathon had to be big. It had to be long, like, really long, eh? (Just threw that in for some Canadian authenticity).

So he decided to run across Canada.

Yep, that’s right. 8000 kilometers. That’s five THOUSAND miles. Makes my little 11 k seem pretty pathetic actually. And I have both legs! For my Swiss friends, to give you an idea of how big Canada is, you could actually plop all of Switzerland into one the lakes just to right of the middle of the country, like Lake Huron for example, and it would fit easily (might stick out the top though, not sure about those alps).

So he started by dipping his artificial leg in the Atlantic ocean off Newfoundland and set off down the road. On his first few days he encountered gale force winds, heavy rain and a snowstorm. At first, not too many people were interested, but by the time he got to the other side of Newfoundland, people started paying attention. One town, Port-O-Basque, met him with a cheque for 10,000$, donations from each of the town’s 10,000 residents.  By the time he made it to Toronto, which took three months, everyone knew who Terry Fox was. Some corporations got the idea to sponsor him for each mile he ran (catchy idea!) People lined the road to watch him as he jogged past.

He had met the Prime Minister, had rallied Canadians to a cause, had made us believe any of us really could make a difference if we wanted.

He made it more than halfway across Canada, 5300 kilometers during 143 days. Then something happened… fatigue. By late August he was exhausted before he began his day’s run. On September 1, outside of Thunder Bay, he was forced to stop briefly after he suffered an intense coughing fit and experienced pains in his chest. Unsure what to do, he resumed running as the crowds along the highway shouted out their encouragement. A few miles later, short of breath and with continued chest pain, he asked to be driven a hospital.

The cancer was back.

Terry didn’t finish his run. But people everywhere continued to donate, and before the cancer took his life the goal of 1$ for each Canadian had been reached.

I was 12 years old when Terry did his run. I remember the excitement. The energy that people felt at the thought that we could make a difference. Only a few short years later, cancer took my grandmother. There was still so little known, so few advances. But as more money started pouring in, as more marathons took place all over the world (the Terry Fox Marathon of Hope is run in over 60 countries now), research did advance. My mom was diagnosed with advanced stage cancer less than 20 years after Terry died, and because of a brand new cancer drug, she’s still with us today.

I am in no way saying I am as glamorous, heroic or well, in athletic shape as Terry Fox. But his message is clear: we can each do our part. So off I go on November 10th to do mine.  It’s only 11 k, how bad can it be? Besides, they have rest stops along the way where they serve water and juice… I wonder what the odds are of a glass of wine?

And YES! You can sponsor me! An amount per kilometer (don’t worry, the maximum is 11km, so there’s not too much risk of breaking the bank! Breaking my back though…) or an amount just to do the run.

Imagine if everyone in Switzerland gave just 1 franc?

Email me directly at Nicole@scobie.ch if you would like to sponsor me. Or donate directly to my postal account CPP 30-604575-9 (this account is solely used for fundraising). All proceeds will go directly to FORCE foundation (http://www.force-fondation.ch/).

If you would like to join me on that day, you can still sign up too, on FORCE’s website!

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.