The Boston Marathon… And feeling lucky

17 Apr

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 my husband 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 think: 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 the 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.

Posted in Fear, cancer, hope, lucky | Tagged , , , | 3 Comments

Meaning

15 Apr

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 feel sorry for that person? I do. I sometimes think about her and feel sad about all the bad stuff she is going to go through. And 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 (like, using the zoom tool on the computer), I am sure 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 beable 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…) Meaningful career? Well, I guess, I mean, if I were to screw up it would be pretty meaningful in the wrong way, so… 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 aspergilosis, 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 parent 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 f 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 can 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’ ll the meaning we really need.

Posted in Feelings, Meaning, cancer | Tagged , | 1 Comment

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

Advice to the Newbies

22 Jan

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…
Posted in cancer, hope | Tagged | 5 Comments

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

13 Dec

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.

  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.
Posted in cancer, family, funny moments, hospital | Tagged | 4 Comments

Worry

7 Nov

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

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

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

Panic.

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

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

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

I think it over.

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

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

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

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

For about an hour, the worry subsides. Then…

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

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

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

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

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

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

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

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

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

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

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

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

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

“It was winter.”

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

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

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

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

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

Panic!

I mention this as casually as possible to my friend.

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

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

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

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

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

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

Posted in Fear, Feelings, cancer, hope | Tagged , , | 1 Comment

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

Friendship

1 Oct

Lately the cancer world has me pondering the importance of friendships. What would we do without friends? Women, especially, needs their gal pals. In fact, recently on facebook a post went around about a study that was done that determined the best thing a man can do for his health is to marry a woman, whereas the best thing a woman can for for her health is to nurture her friendships with other women.

It’s just so true.

A friend can be there to support me through the difficult moments of Elliot’s diagnosis and treatment, even if her children have never had cancer. She “gets it”. It doesn’t matter that it’s not her child, she actually feels the fear and anxiety I feel. How do women do it? We take on all the pain and suffering of those around us. When someone we care about hurts, we hurt too. Men are better at compartmentalizing their lives, at separating their emotions from their actions.

I was chatting recently with a mom, who’s son had cancer years ago and is now considered “cured” (apparently you can only say “cured” with quotation marks, because there is never a real guarantee. Darn it, and here I was hoping for some kind of official He Is Cured document from the hospital at some point!) She mentioned that someone had recently told her that she should now “shut the door” on cancer, that it’s part of the past and it’s time to move on to thinking about new things.

We stared at each other a bit after she said that. Then she said it would be pretty hard to do as she had just signed up for a two year term working with a children’s cancer group.

We laughed.

The thing is, there’s no door to shut.

Being a cancer mom isn’t a choice, and it’s (unfortunately) not a temporary role. Nobody enters the cancer wold willingly, but once you’re there, you don’t have much of a choice. You adapt. Even my friends whose kids don’t have cancer have been dragged into this world with me, sure, not as intensely as I have, but whether they like it or not, they can now chat easily about blood cell levels and remission and chemotherapy side effects and vomit stain removal and needles and port-a-caths. And they can laugh at it all, and cry at it all, and while they laugh and cry they can also make supper and do two loads of laundry and find the missing lego piece and clean the living room and feed the cat and stop one child from hitting the other and text a friend and polish their toe nails. While they are doing all this the husband usually only has time to walk into the kitchen open a cupboard, stare into it’s depths for several minutes, then ask, “Where do we keep the salt?”.

Ok I don’t mean to insult the male population there, and I may be slightly exaggerating (my husband actually knows where the salt is!). But seriously folks, let’s take a few seconds here to applaud all the women out there, cancermoms and cancerfriends, who are going through this journey or have gone through it already.

I live in an otherwise all-male household. This has some advantages. I told Jesse the other day to take out the garbage, and he replied with some kind of grumble that sounded like “ok”. A friend of mine (male) with a teenage daughter recently told me he had asked his daughter to take out the garbage and the girl broke down crying, accused her dad of trying to ruin her life, and ran to her room, slamming the door. It turns out she had just done her hair and put on her new skirt which she had wanted to show her dad (which he failed to notice) and it was raining out, which, any woman would know, means there is no way the garbage is being taken out in these conditions and how dare you not notice my hair and outfit?!?!

Jesse took the garbage out without another word. He also did not bother to put on socks and shoes or a t shirt. And it was raining out. When he came in I said “You”ll catch a cold going out like that!” and he grumbled something that sounded like “ok” and walked into the kitchen and ate an entire loaf of bread, jar of peanut butter and drank a liter of milk.

So there are advantages to the testosterone prominence in my home, and disadvantages. Sometimes, I miss having someone to talk things out with. There are occasions, during quiet moments, when I have said to my husband “So what do you want to talk about?” and he gets that slightly panicked look. Daniel comes home from school and I excitedly ask him how his day went, what did they do etc etc (It’s a new school year, I’m curious!) and he replies “it was very… school-ish.” and I don’t get much more then that…  I still recall noticing Jesse, around age 6, staring intensively out his bedroom window for a long thoughtful moment, and asking him what he was thinking about. He replied “Well, when I see a car, I think: ‘a car’. When I see a person, I think: ‘a person’.”

With my friends I can talk easily about all of life’s mysteries. The anxiety of worrying about a relapse. The ups and downs of every day life. The stress of juggling the kids’ back to school schedule. The joy of shoe shopping. The confusion of relationships.

There is a special bond between cancer friends too – we who have faced “the dragon” and felt its hot breath hovering over us (oh that was very descriptive, wasn’t it? Feels right, like we’re little knights in shining armour brandishing our swords above our heads, torn between fear and fury).

You would think a group of women bonded by cancer would be a sad, weeping lot, all of us sitting together in a semi circle, sharing our sad tales over tea, a box of kleenex nearby being quickly being used up. Well, so far, in my experience, it has been quite the contrary! Swap that tea for a good bottle of red wine and there we are, laughing our heads off as one mom tells the story of sneaking a pizza in to her daughter’s hospital room and being caught by a nurse. Keep the kleenex, we’re laughing so hard we’re crying.

Don’t get me wrong. Behind that pizza story is the very real image burned into our minds of the mom who has stayed by her child’s bedside for days, the i.v.s of chemotherapy and anti-cancer medicine hanging overhead, and then the anti-nausea medicine, the anti-pain medicine, the medicine that helps you get over your addiction to the anti-pain medicine, the medicine that helps you sleep, stay awake, poop, not poop, and of course the medicine to treat the side effects of all the medicine. The mom who is exhausted, hungry, scared, sad, and has decided that dammit, she’s having pizza with her kid. The mom who is overjoyed if her child is actually willing to eat one bite of food.

We don’t need her to explain all that because we’ve all lived it. What we need, mostly, is to laugh. And be together.

Because when the dragon rears it’s head and starts charging at you, and all you’ve got is your little sword, you need everyone else to show up with their little swords. One dragon against a whole bunch of sword carrying women (and a pizza) is all we need to keep fighting. And hopefully, most of the time, win the war.

Posted in cancer, family, funny moments, hospital, kids | Tagged , , | 1 Comment

Advice to Adults with Cancer from a Five Year Old

18 Sep

Here’s a light-hearted look at cancer from the point of view of my son Elliot, who was only 4 and a half when diagnosed. I know many of the adults I am in touch with who have cancer, or who are helping a person with cancer through this journey, will relate!

1. It is perfectly acceptable to have a complete tantrum and throw your shoes around just before leaving for the hospital.

2. You always deserve a present after chemo.

3. If you feel like showing more respect and politeness to the hospital clown than your oncologist, that’s ok.

4. If you manage to grab the syringe of medicine from the nurse, it’s their loss and you are then allowed to squirt its’ entire content around the room.

5. You are allowed to complain loudly about any smells like perfume, but you are also allowed to fart freely whenever and wherever you want.

6. Anyone who says “this one tastes like syrup” better be not be lying or they can expect to catch some spit.

7. You are allowed to worry about life and death, but only to the same extent that you worry about whether Santa Claus will be able enter your home if you don’t have a chimney.

8. Speaking of worry, you are not allowed to worry about anything that is not going to happen today or tomorrow.

9. Any bad thing that happened in the past should be quickly erased from your mind using ice cream.

10. It’s ok to throw up directly on your caregiver instead of into the bucket they are holding. It will create warm and funny memories for them once this is all over.

11. Good friends may stare when they first see you without any hair, but they are quickly more interested in all your new toys. So make sure you have lots of new toys around all the time.

12. It is the right thing to do to jump off the examining table if the doctor’s hands are too cold.

13. A popsicle for breakfast is a good idea and goes well with bacon.

14. If someone rubs your bald head and says you’re cute you should stare at them in complete boredom until they stop.

15. Always believe that scars are badges of courage and make you look like a pirate or a superhero.

16. Jumping on the bed is a perfectly acceptable form of exercise.

17. Someone should always be available to carry you if you don’t feel like walking anymore and they will be grateful if you look at them lovingly and say “You’re my slave.”

18. It’s a good idea to frequently press the little button next to the bed that makes the nurse come running, because she might be lonely and bored, and enjoys picking your crayon up from the floor.

19. The only part of hospital food you should eat is the desert. The rest is not really food anyway.

20. Make having fun your priority, all the time, no matter where you are or what’s going to happen next.

Posted in cancer, family, funny moments, kids | 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