Monthly Archives: June 2012

Fear

25 Jun

Elliot, walking into the bathroom where I was brushing my teeth, looked at me seriously and said “I think my heart is going to explode.”

Needless to say, I dropped my toothbrush and asked him what he meant. He put his hand on the upper left side of his abdomen and said, with a worried look, “It hurts right here.” I knelt down in front of him, and lifted his shirt.  The area he was indicating was roughly where his remaining kidney is, so my heart started beating a little faster. I asked him to describe the pain.

“Well, I was jumping up and down on the sofa…” (does a little jumping dance at this point to demonstrate), “and suddenly I felt this pain!”

We stare at each other a bit.  I tentatively ask if it still hurts now, since he is looking pretty much ok.

He hops around a bit, then declares “Yep, still hurts. Hey!” A lightbulb goes off on top of his head. “Isn’t this where my other thingy that makes pee is? Maybe it’s a new lump?”

A lump is forming in my throat as he says that, but I calmly say “You mean your kidney .”(“Yeah, kidney”, he repeats). “I doubt there would be a new lump there Elliot”, I say, amazingly staying completely calm, “ For one thing, you had a scan that didn’t see anything, and also you are still getting chemotherapy which would make sure that never happens again.”

“Hmmm,” he thinks it over, actually scratching his bald little head. “Oh maybe it’s allergies like you said I would have!”

Both Martin and I have hay fever and have been suffering with it a bit recently, and were wondering if Elliot would eventually have it too.

“Maybe” he says excitedly, “I breathed in those bad pollen thingies and they went into my lungs and made a hole and the air went down into those tubes where the poo is…”

Me: “Intestines?”

Elliot: “Yeah instead- tins! And now the air has made a hole!” His eyes open wide with the dramatic intensity of his prognosis.

I ask him a few more questions, and find out that he just ate a huge lunch before deciding to jump around on the sofa. I am starting to get a glimmer of a possibility.

“Elliot, I honestly think what you have is a cramp.”

“A cramp!” he says with horror, his eyes huge. “Is that really bad?”

Oh my poor sweet little boy. I wondered at the beginning, when he was diagnosed, if there would be any psychological side effects, and hoped that because he was so young, he would not be too affected.

But, resilient though he is, he knows what’s going on. Not too long ago,  on a day we had to leave for the hospital, he was in tears as usual, resisting my attempt to get his shoes on, saying he needed to watch “just one more tv show” and eat “just one more snack” and then he would be ready to go. We insisted, explaining patiently for the millionth time that this treatment was essential to making him better again. He looked at us with big tearful eyes and said “Why did I have to get this? Why couldn’t I get an illness that was easy-peasy?”.

He knows that cancer isn’t easy-peasy. He worries about the treatment, about how he will feel after the treatment, and about whether the cancer could recur. Just like we do.

I wanted to spare him all that by always acting optimistic around him, never showing him just how scared I was too. But he’s figured it out anyway.

A few nights ago I went in to check on him as he was sleeping. He had been wheezing a bit, so my mom-radar was on. He’s always had a bit of asthma so I knew it was probably nothing unusual, but I wanted to check on him anyway, because well, that’s what I do. Worry and check. Check and worry.

He looks so innocent as he sleeps there, curled up on his right side and snuggling his polar bear. I put my hand on his chest to feel him breathe.

And that’s when I feel it.

A lump.

On his upper right chest, just below the shoulder. Elliot had lung tumours in that area. Well, he had lung tumours everywhere. Lots of them. But the chemo made them all shrink.

This feels hard, like bone. I am breathing faster and can feel my heart beating, but I tell myself that it’s just because of the position he’s in. I move him down onto his back so he is lying flat, and feel for it.

Still there. I feel the same spot on the other side, on his upper left chest. No corresponding bump that would somehow make me think this is a normal part of his anatomy.

My heart is pounding in my ears now, as I sit there in the dark. I feel covered in icy sweat. I keep feeling back and forth between the upper left and upper right side. There is no doubt: he has a hard lump on the right side, the size of a quarter.

Panicking, I turn on the bedroom light and lift up his shirt.  Elliot wakes up groggily and mumbles something about leaving him alone.  And two things happen simultaneously: I see the port-a-cath bump on his chest and realize there’s no lump.

The port-a-cath bump. The same bump that has been there for the past 10 months, ever since the operation to install the port-a-cath, through which he receives chemo.  The same bump that I see every day when he gets dressed, when he bathes, and of course when they do the chemo. The bump that feels just like a hard, quarter sized lump.

He looks at me with a sleepy smile, pulls down his shirt and rolls onto his side, snuggling closer to his polar bear. “Can you turn off the light when you’re finished please?” he mumbles, and then he’s asleep again.

So I flick the switch and sit there in the darkness for a while, my breathing still fast, my head swimming.

There’s no new lump. The treatment really is working.

When does the fear go away?

Is it in a couple weeks when we get the results of the end-of-treatment scan, telling us we are “officially” done treatment and only need to come back in three months? Is it only after that two year post treatment milestone, knowing how unlikely relapses are after that date? Is it when he’s a teenager and comes home safe after a night out with friends? Is it when he moves out and starts his own life as an adult, no longer our child to worry about?

My mom has been surviving cancer for 12 years. She has CT scans every three months, and every time, there must be a bit of the “what if” fear. But she never shows it, at least not to us, her kids.

How do you live every day without being overwhelmed with worry? And yet, life involves risks, every day. When I strap Elliot into his car seat, I never think about the risk of a deadly car accident, and yet, the lifetime odds of a car accident are 1 in 4. Odds of dying from a car accident are 1 in 100. The statistics for Elliot’s cancer: 1 out of every 10,000 kids will get this, and the cure rate for those is roughly 80%. So, statistically speaking, I should be more worried about the drive to the grocery store than the cancer. But that is not how our brain works.

I wrote not too long ago about courage…(http://nicolescobie.com/?cat=16). I realize now that not only is it important to face fears during moments of crisis, but also in the long term, and every day. Life equals risk. As I was looking up those statistics earlier, I came across one important fact: your lifetime risk of dying is 100%. We try to ignore that fact, but there it is. Is there a way to turn that fact into a good thing? Maybe. It’s a reminder of how precious our time together is.

While I write this, Elliot is snuggled under a blanket on the sofa, cuddling his polar bear. Today is a chemo day.

I guess I’ll go snuggle with him.

Posted in Fear, cancer, family | Tagged , , , | 2 Comments

Family in the Cancer Crisis

21 Jun

When I was just a baby, my older sister Michelle, being at the wise age of 2, decided that I was boring and informed my mother that this whole baby thing had been a bad idea. My mom was probably only slightly tired at the time (after all, she had been given the entire 2 week unpaid maternity leave from work which was all you got back then, and then had had to go back to teaching full time. How could that possibly tire you out?) She responded in a mildly annoyed way (I’m making this part up of course, I have no memory of this but I like to picture it this way): “Well, Michelle, what would you have me do, throw her in the garbage?” To which Michelle crossed her chubby little arms across her chest and dared my mom: “Well, yes, let’s throw the baby out.”

There are differing versions of this story depending on who tells it, but in Michelle’s version I am actually casually tossed into the garbage can, at which point my valiant and righteous sister quickly changes into her superman costume and rescues me. My mom claims she pretended to walk toward the garbage can while holding me and Michelle flipped out and begged her to change her mind.

Regardless of which version is correct, I somehow survived the brutal garbage canning of 1968, and went on to become a normal child (Michelle is snickering as she reads that.)

From that moment on though, Michelle has been rescuing people. I have a relationship crisis: Michelle drives 8 hours to be by my side. My brother Billy’s car accident: Michelle is the first to the hospital. Younger brother Martin needs help out West: Michelle gets on a plane. My mom’s surgeries: Michelle is there day and night. I move across an ocean: Michelle keeps showing up just because I get married or I have a baby or my baby gets cancer.

Ouch that last one felt like a glass of cold water in the face. Let me re-group and re-cap: Michelle is the Family Social Worker, who is basically in charge of any Crisis Department. My family regularly has crises, so this keeps her quite busy. Never mind that she has a family of her own and a job… oh yeah, as a social worker.

Billy is the Strong Silent Type. I’m not sure why he’s always described like this because he’s not really that quiet. He did beat my son Jesse at arm wrestling last year, which I would not have bet on even slightly. So I guess that makes him Strong. He was pretty Silent during his coma for a couple months back then after the car accident, so maybe that counts.

Martin is the Black Sheep. This is only because he has dark hair and tans better than the rest of us.

And Julie is the Beautiful Young Princess of the family and gets to do whatever she wants. She will disagree with this when she reads this on her own laptop after watching tv while eating ice cream. Ask Michelle and Billy and I about desserts in our home when we were kids. Go on, just ask.

So why have I regaled you with descriptions of my family? Well, maybe to make you think of yours…

Family is what gets you through a crisis. For many of us, friends and extended family are included in that overall description of “family”. When you are dealt a cancer diagnosis, your family, whatever it’s form, is who shows up and closes ranks around you, a show of defiance in the face of an enemy attack. Together, we can fight off the attacker.

My family is a big one. I have… uh… a few cousins. (Shout out to my cousins here… just how many of us are there? I’ve lost count.) My dad comes from a family of 5 kids. My mom has 10 brothers. Yep, you read that right. And since they are all married and most have kids and most of their kids have kids… Let’s just say I’ve never had a reason to feel alone in the world.

When my grand-maman was still alive (she of the truck-caning incident) we had large family get-togethers, at Christmas, Thanksgiving, Easter, and sometimes just on Sundays, because, well, that’s what you do. But mostly in the summer, we would have the Family Reunion.

A Family Reunion in my family lasts three days. It also takes months of planning and strategizing, throwing together possible scenarios, location, theme, meals, wine to serve etc. To do the strategizing the family has to get together several times throughout the months leading up to summer, and eat and drink and debate anything debatable like the merits of whether to finally hold it out in Vancouver for once against the fact that no one feels like flying out there, and since none of the Vancouver relatives came to the meeting, they get outvoted. (Go on, Onc’Eugene, you know you need to comment on THAT!)  It is always finally decided to host it in a location where we can all pitch tents and make campfires and sing songs loudly late into the evening while sitting around the fire, the kids running around behind us in the black starry night. So usually somewhere not far from Ottawa or Montreal. Often it has been at my cousin Louis’ who is not allowed to ever sell his home by the water in Aylmer. It’s actually been written into the family bylaws. (Has anyone told him this?)

This year, my family is planning the Family Reunion once again. I am picturing them in their “planning sessions”. They argue and they laugh. The kids who used to run and play in the starry night are grown, and have kids of their own.

I moved away from it all when I moved to Europe, and I miss it. Especially in times of crisis, you need your family around you.

And yet, somehow, magically, my family has managed to support me from across the ocean, throughout our cancer crisis. Cards, gifts, letters, emails. One uncle was so worried that he might miss Elliot’s birthday that he mailed the card priority, costing a small fortune, to show he cared. I have cousins who’s wives keep in touch with me even though we have yet to meet. Elliot feels he is part of one huge, extended family.

There is also my husband Martin’s side of the family who have been there for us right from the beginning, about whom I could write a whole blog article too. (Note to self: write blog about Martin’s family. Enquire through trusted sources (his mom and sister) about amusing anecdotes from his childhood to include in the story. Perhaps the time he was attacked by a monkey? Or that time he shot himself in the eye? There is definitely some material there.)

Cancer. It sucks, it scares, it robs of our innocence and our time together. But it doesn’t define us. Facing Cancer Together… Great name for what this battle is truly about.

Posted in cancer, family, funny moments | Tagged , , | 5 Comments

Comedy in Tragedy

14 Jun

Don't know who this guy is...

One of the ways in which real life is so completely different from any fiction you might see in a movie or on tv is the fact that even in the midst of tragedy, there are funny moments.  These you don’t see on tv.  Can you imagine Kate Winslet hanging off the bow of the Titanic, arms thrown out to her side, eyes closed as she breathes in the fresh, dark night… and then a seagull poops on her shoulder? Ok I know, there wouldn’t likely be seagulls out in the north Atlantic on a cold night, but if there was… it would be kind of funny, right?

Well the reality is that these funny, bizarre moments do happen, even in the midst of the darkest moments. Sometimes, you are in too much pain to notice them. But other times, it is the very emotional vulnerability you are feeling that opens you up to the hilarity of the moment.

On the night Martin and I received the official diagnosis about Elliot, we cried and hugged outside of his hospital room before going in. We didn’t want him to see us so extremely upset. Then we took a deep breath together, and entered the room.

We sat next to his bed and did “normal” parenting things, helped him into his pyjamas, brushed his teeth, read him each a bedtime story.

Then we sat facing each other, whispering, surrounded loosely by the pale pink and pale blue curtains that hung tightly around our chairs and his bed, and Elliot fell asleep. We talked over how the next few days would go. Suddenly our plans had completely changed. Everything and anything that we thought had been important was suddenly re-evaluated. We made some decisions. Trips would be cancelled.  Our shifts at work would have to be changed. We can get thought this! We whispered bravely. Oh, let’s not forget that appointment we had next Tuesday, call and postpone that. And the night out with friends on Saturday, just send a text cancelling. What else… We sat in the darkness facing each other, whispering, holding hands. The red lights of the monitors providing the only break in the blackness around us. The teenager in the bed next to Elliot’s coughed, a loud rusty noise in the quiet of the room. “ Oh”, whispered Martin,  “And the other two, we can’t forget the other two. They will need us to get through this. We have to be strong for them, and not let them feel abandoned.” I felt my throat getting tight, hearing him speak so thoughtfully and paternally about my two older boys, only a few hours after hearing of his only child’s critical illness.

“Yes,” I say, “We’ll just have to keep right on being good parents to all three of them. It would be too easy to start being overly indulgent of Elliot and forget their needs too.”

Thinking of something else, I add: “And also, we really have to not become too overprotective.”

Martin nods slowly. His ears heard: “And also, we really have to not become too over productive.”

He quietly says: “Um, in which way?”

I say: “Well, you know, it would be natural to want to just keep him safe at home from now on during the treatment…”

He says: “I don’t think that’s a good idea, really…”

Me: “No, exactly! We still want him to be able to go out and have fun with life! Right???”

Martin: “Ok, but you want us to relax more? Work less? Just stay home and have down time?”

Me, starting to feel a bit annoyed: “Well I think we’ll get bored if we’re home all the time! And then I’ll just worry more if I don’t have anything to do!”

Martin: “Ok Ok I agree, we’ll just be really careful and keep him home a lot, and not do too many activities or take on too much!”

Me: “But I don’t want to just keep him home all the time! I want him to do some of the same activities he was doing before!”

Him, whispering quite loudly: “He can still do some of the same activities and it doesn’t mean we’ll be spending all our time running around from work to home to activities, we’ll still be able to manage! Don’t worry!!” he is starting to look exasperated. “We’ll never have time to be over productive!!”

I stare at him for a while. My tired brain goes into slow rewind, and replay of our conversation.

“Martin” I whisper, leaning forward toward him. He leans closer.

“I said overprotective, not over productive”.

“ohhhhhhhhhhhhhhhhh…”

And we giggle. A bit more. A chuckle. A stifled laugh. Louder, then we just basically start laughing, both of us sitting there shaking in our little curtain tent, laughing out loud with tears rolling down our faces, Elliot sleeping like any 4 year old does regardless of noise, the other older boy sleeping and snortling in his bed like any leukemia patient loaded up on morphine sleeps through noise…

Laughter in the face of tragedy. A strange partnership. But oh so real.

With my mom’s diagnosis, we had many moments like that. I remember after her first operation, she was hooked up to one of those machines that monitor the i.v., and beeps when it gets low. It also beeps after a few minutes if you unplug it, because the battery life is quite short. And, as any patient or caregiver reading this will also tell you, it also beeps at random sometimes just to annoy you.  These machines have a mind of their own and need attention.

So my sister Michelle and I are on the evening “shift “at the hospital, watching over our mom who had fallen asleep after telling us to stop giggling. It’s like being a kid again, in the back seat of the car as our mom tries desperately to drive us to school on time after we’ve missed the bus, and now are stuck in traffic, and we’re giggling. Only now that I have my own three kids can I relate to how the giggling is just making the situation worse. But I digress.

Michelle and I were giggling because we are slowly being driven mad by the unpredictable beeping of the i.v. machine. It had been beeping non-stop for 30 minutes, but the nurses were just switching shifts, the day nurse leaving and the evening one having just arrived for the night. It’s dark out, our dad has brought Julie (youngest sister) home for supper.

And the machine won’t stop beeping.

Michelle ventures out into the hall, finds the nurse, and tells her that, well, the machine that beeps, is well, beeping. Our medical lingo was not as good then, we actually referred to it as the beep-beep machine. The nurse exasperatingly says she’ll be there when she has time, and that they are quite short staffed tonight.

Sidebar here, as I mention that nurses just don’t get paid enough for all the work they do, they are truly the unsung heroes of the medical profession. I could go on about this for a whole other blog… Maybe I will at a later date. But the fact it that they work hard and are often overworked and overtired. It is not surprising that they can sometimes lose patience. And yet, I have rarely seen them be anything less than professional.

In any case, we wait another 20 minutes, surrounded by beeps and an increasingly frustrated mother, who is being woken up by the noise. Both Michelle and I make attempts at reading all the labels on the machine, trying to figure it out without touching it. We check the cables, but they all seem ok (in our expert opinion).

We peek out into the darkened hall again. No nurse.

Finally, I press one of the buttons on the machine. It still beeps. Michelle presses another. The beeping stops, then starts three seconds later. So we both just start randomly pressing all the buttons.

The nurse comes in.

Caught with your hands in the cookie jar.

We leap away from the machine.

The nurse grumpily quickly pushes some of the buttons until the machine stops beeping. Since she’s there, she also checks our mom, does a few nurse- type things while Michelle and I hover in the background like school kids. Just as she is about to leave the machine beeps again, like it’s saying goodbye. The nurse sighs, turns around, stares at it angrily with her hands on her hips, then says it must be the battery alarm that’s malfunctioning, and she’ll get a new machine when she has the chance but right now she has to do the rounds. And she leaves.

Beep.

Michelle and I look at each other. Our mom has actually fallen asleep now, and we consider whether we should just go home.

Beep.

Or, maybe we should look for a new machine? The nurse won’t have time for hours…

Beep.

Maybe we could just kind of go for a little walk through the quiet dark hospital, and if we happened to see a loose beep-beep machine, commandeer it?

Beep.

We head out.

And this is how Michelle and I happened to find ourselves wandering the dark hallways of the hospital late one evening, peeking into empty bedrooms, avoiding any people who looked official (by the way, anyone walking around a hospital late at night looks official).

Our plan was to get a beep-beep machine, roll it back to our mom’s room (somehow carrying it up or down staircases since we were avoiding the more populated elevators), and triumphantly show it to the nurse who would gratefully hook it up to our mom, thus making us the heroes of the Quiet Night’s Sleep.

At one point it did occur to us that we might get caught, arrested, and thrown in jail on suspicion of medical equipment theft. This made us laugh quite a bit.

So we were actually wandering around the dark, quiet hallways of a hospital late at night, laughing our heads off, and looking to steal a beep-beep machine.

I won’t tell you how the story ends, but let’s just say I have no criminal record. The photo here is Michelle and I, looking very innocent. Never mind that the actual events I’ve described take place roughly 20 years after this photo was taken.

We always look this innocent

I wonder now if our mom appreciates all the hard work we did for her. I somehow suspect she would rather not know about it…

Funny.

And tragic.

Can you relate?

Posted in cancer, family, funny moments, hospital | Tagged , , | 6 Comments

Long term side effects.

8 Jun

Saving a life, paying the price?

One of the things that remains an important issue for my mom after all these years in treatment is the long term effects the very treatment that is saving her has caused. In the medical field this issue is often referred to as “survivorship side effects”. It’s a bit ironic, isn’t it? The chemo has side effects, the surgery has side effects, the radiation, hormone therapy, immunotherapy, whatever else they may have thrown at you had side effects… And then they give you medicine to counter the side effects, and that medicine has side effects!  So you take all this and do what you’re told and finally feel like you are coming out of the tunnel and then suddenly you find out you have survivorship side effects!

My grandmother, on my mom’s side, lived almost to age 97. She was healthy and independent till a very advanced age. I remember once a truck had the nerve to cut her off as she was crossing the street downtown Ottawa, and she hit back… with her cane. I pity the driver.

My mom fully intends to follow in her footsteps (age-wise, not cane-and-truck-driver-aggression-wise), perhaps even break 100. And why not? Her cancer is in check, she is active and lives a healthy life.  Age has never slowed her down, and in my opinion, never will.

So, one day, after browsing her medical records (like you do), she noticed the phrase “moderate kidney disease”. When she asked her oncologist about it, he dismissed her concerns about the chronic kidney damage that was probably the result of years of cancer treatment saying it was not of concern because at her age this could happen anyway. The unspoken insinuation was that it wasn’t “worth” looking into, because of her age.

Now let me tell you about my mom. She doesn’t get angry, until she gets angry, and then, well, she gets angry.

The oncologist died a slow, painful death.

But seriously, she got herself another opinion, another oncologist. The issue is not yet resolved, but the fact is, cancer treatment naturally focusses on the immediate, and issues of future and long term health are secondary. This makes sense. Why check the coffee supply if the plane’s engines have just died (you’ll notice I use a lot of aviation analogies… Occupational hazard). But as survivorship rates are increasing every year, this is becoming an important issue, one that could impact not just our own health, but the economic future of our country. Health insurance is already expensive enough, we don’t need to be paying for long term kidney dialysis, for example, for someone who inconveniently decided to live for another 30 years. Why not treat the problem now instead of waiting till it becomes critical? (What if the engines are out because the pilot is tired and… and… ok I’ll stop).

Survivorship side effects? Of course these exist, and we have no choice but to accept that fact. My son is only 5 years old and coming out of 10 months of treatment which included surgery, radiotherapy and 24 rounds (so far) of chemotherapy. He has an excellent prognosis but the long term effects all these treatments will have on him in say, 20, 30 or even 60 years, are still being studied.

No matter what your age or prognosis is, you should request to be treated as someone who will live to be 100.

And if any truck cuts you off, hit it with whatever you’ve holding.

How do you feel about long term side effects? Do you have any survivorship issues or concerns? I would love to hear from you about these issues, and what you think the solutions are.


Posted in cancer, family, side effects | Tagged , , | 1 Comment

And so the cancer dragon strikes again…

4 Jun

The first time was my grandmother. I was 19. She was 67. The brain tumour that took her life was a complete surprise, we were so caught off guard we hardly had time to react, and then she was gone. Her funeral in St. Catharines was huge, people lined the streets with candles. I was your typical teen, just moved out of my parent’s house with my musician boyfriend (they loved that), and I knew everything about everything. My grandmother’s passing away was the first time I realized that life was fragile, and precious.

The second time the cancer dragon struck was with my mom, about a decade later. This time I was a single mom with two young kids. My mom phoned me one day, she had been waiting for the results of a CT scan, and the doctor’s office had just called her to ask her to come in, and to bring a family member. My dad was out of town. You just know it can’t be good news when they say that. We sat together, across from her doctor’s desk, as she explained what they had found. It can’t be easy for a doctor, having these conversations, and this woman was kind and patient, and possibly a bit upset about the diagnosis too. I wonder if they get any kind of special training for it, or are they just winging it? Do they say “the tumour is the size of a grapefruit” so that you can understand better, or because there are no better words to describe it?

Fast forward another decade and I am once again sitting across from another doctor, who is also using fruit to compare the size of a tumour, this time in my little 4 year old boy, Elliot.

And so you are probably wondering: when does the dragon finally get defeated, when do the knights and princesses finally escape and ride off into the sunset, happily ever after? Is the dragon just going to hide a while and strike again? Is there ever a time we can all feel safe? Is there any point even trying to win this battle, against such a formidable enemy?

Absolutely! My family’s story is a perfect example of a reason to hope.

When my grandmother was diagnosed, the treatment was fairly basic: surgery, then wait. The prognosis was never very good, right from the beginning. That was 24 years ago, not so very long ago for us, but in the world of cancer research, an eternity.

My mother was diagnosed in 2000. During her operation, to remove the “grapefruit” on her small intestines, my dad and I roamed the halls of the hospital, finally finding the medical library where we searched through oncology books to try to guess what kind of cancer she had. Yes, that’s right, it was 2000, not so long ago! But we weren’t all just google-ing things yet then, we actually looked in books! My dad and I have similar personalities: obsessive analytical worriers who believe if we work hard enough we can control everything. I won’t mention my job at this point, but let’s just say it’s fairly well suited. Interestingly, my mom and my son Elliot also have similar personalities: they’re not worriers, they enjoy life to the fullest, and live in the moment.

So my dad and I are searching through huge complex oncology manuals, and our research finally leads us to a diagnosis. Basically, we looked at all the prognostic features of anything this could possibly be, then chose the one we liked best, and decided that was it. Confident in our diagnosis, we head back up to the waiting room where my older sister is. Now my older sister is a whole different personality, actually a lot like my oldest son Jesse (except today Jesse is going through that teenager thing where he knows everything about everything… How annoying is that?). Michelle is outgoing and friendly, and she basically holds the family together.

So we announce our diagnosis. (I can’t actually remember what it was, except that when they finally did tell us officially that it was called GIST (gastro-intestinal stromal tumour) we both of course felt we had been right.)

Michelle kind of gives us the “stare”.

My little sister Julie sighs with relief as we relate the good prognosis associated with our diagnosis. Julie is the trusting one.

Michelle asks if we have eaten anything all day, which is when I suddenly realize I have perhaps forgotten to eat for a week and am starving. Michelle pulls out two cheese sandwiches (out of where I don’t recall, she’s like that) and my dad and I wolf them down, talking rapidly between bites about the possible further treatment our patient will need, options, possibilities. It’s funny how memory works. I remember us sitting in the waiting room vividly, but can’t remember the time of year. I remember the cheese sandwiches, but have no idea where they came from (does she carry cheese sandwiches around in her purse?). I remember that all this was while my mom was in surgery, but I can’t remember for sure if this happened during her first surgery or the second one that was done a few months later to remove a metastasis on the liver.

I definitely remember some months after that second operation, when they told us the liver now had several new tumours, being slightly angry at whoever had written the book in that library. This was not part of the plan. And “inoperable” was not a word we liked.

My son Jesse, age 9 at the time, still believed I knew a couple things, and asked if there was not some medicine they could give her. But in early 2001, there was not.

And then, suddenly, there was.

In May 2001 the cover of Time magazine featured a photo of a small pile of yellow pills, a new drug, the article referred to as “magic bullets”. By some lucky twist of fate’s timing, the drug Gleevec, the magic bullet, had just been approved for the type of cancer my mom had, and her doctors immediately put her on it. This time my dad and I were out of our league: there were no studies, no prognosis we could fall back on. It was all new.

But it’s working. Not perfectly, the tumours are still there, not really growing, not really shrinking. She will have to take this medication forever, or until some new treatment is discovered.

And now, 12 years later, my mom and family are flying here in a few weeks to visit me, and to take part in Elliot’s end-of-chemo party which will be, appropriately, on July 1st, Canada Day! Elliot is in remission with an excellent chance of a complete cure.

What better hope is there than the knowledge that because those who faced the dragon before us were strong enough to fight, we get to benefit from all the research and advances in treatment their fight provided us?

Posted in family, gleevec, hope | Tagged , , | 9 Comments