Making It Count

I admit it. I have an obsession. I want to count. I want to matter. I have had this ever since I was a young child. Maybe everyone feels this way – I’m not sure. But ever since I was young, I was terrified of being ordinary. I always wanted to be special, stellar, an ace, the best. I lived off accolades from other people (one of the many reasons why I loved acting - where else do people applause every time you are done working?). As I grew up, this shifted from a rather self-centred drive to be the best (at anything) into a longing to make an impact. To leave a positive mark on the world before I die. To change something for the better. 

Actually facing my own death made this a bit interesting. After diagnosis, I reflected on my life and wondered what, exactly, I had done that would leave any mark whatsoever. I hadn’t worked in refugee camps. I hadn’t published anything of note. I hadn’t started my own charity for impoverished children. And then I looked at my kids.

Right. Those little humans.

You see, I have started to notice an interesting thing about this generation of young mothers. While there is, of course, nothing new about the unending conflict between staying home and going to work (and the so-called “mommy wars”), what I have been noticing is a large internal conflict in many of my friends between wanting to “be something” and wanting to be a mother. As if those two are mutually exclusive.

Because, for some reason, many of us don’t count raising a human being as something significant.

Of course, logically, we know it is significant. Endless pages of words have been written about this issue. And yet, when that is our sole focus, when we put our career aside in order to care for young children, many of us feel like it is not enough. It is not prestigious. We are reminded as we wipe peanut butter off our jeans and clean up the kitchen for the fifth time in one day, that we are “just” mothers. (As if there is anything “just” about 24/7 parenting.)

I want to share with you a quote from one of my dear friends, a friend I’ve known since childhood who is a lawyer and a very accomplished career woman, but like many of us, has made professional sacrifices in order to be present for her daughter. This is what she wrote to me, when I told her that not working outside the home made me feel like a professional loser: “When done well, raising humans is noble.  But only hippies talk about it. Professional people apologize for and/or cover up anything related to their children, because after all most of the human race has managed it.”

Perhaps this doesn’t resonate with you, but it really hit home for me. I am not judging anyone’s work or stay-at-home choices. But when I was in therapy post-treatment (and believe me, therapy after cancer is a must), I was lamenting the stall in my career and how I might die without doing anything “important.” I wanted to get back in the game, to have a career, to “lean in.”

My therapist gently pointed out that I was raising two kids. Wasn’t that important?

 
Of course it is. It is, as my friend put it, noble when done right. It is the most important (and exhausting) job in the world. How could I think anything otherwise? But at times, we need reminding. These little tyrants who mess up our houses and assault our eardrums and wake us up all night are also the future custodians of our planet, future doctors, actors, writers, world leaders, and future parents of future little tyrants. 

That is no small thing.

On Saturday, I had to bring my daughter to the children's hospital because she fractured her elbow, horsing around with her brother. I was so grateful that I was alive and healthy and able to comfort her through that ordeal. The first broken bone is not a milestone to be missed. And her mommy was there.

On Tuesday, I got to bring my son to his first day of school. Five years old. Kindergarten. It was hard to believe. Once I got home, I became quite emotional as I realized that I could have missed that day. I almost missed that day. Had it not been for my donor and my doctors, I would not have been there to hug him and send him off. I would not have been there, waiting on the step, as he bounced off the bus with a huge grin on his face.

Of course, I still want to be extraordinary. That will never go away. But I am learning that there are many different ways to do that. I heard a great quote the other day that said: "Don't be realistic. Realistic is where ordinary people live ordinary lives. Be unrealistic. That is when you will do and be amazing things."

Indeed. So now I am striving to be as unrealistic as possible. I want to live until I'm 90, disease-free. I want to publish many, many bestsellers (that are all turned into movies, of course). I want to make a difference in the lives of impoverished children and at-risk teens. I want to move our family to Vancouver. I want a house overlooking the ocean. (Hey, if I'm going to be unrealistic, I'm going all the way.)

So as I lean into the value of motherhood, I also recognize that I still want a career. Not the same one I had before cancer. I’m letting that go. I’m simply not interested in an academic life that demands fifty hours (or more) a week. My life is too short, and too precious, to work that hard, to invite that stress into my life. But I do want something. And so now I explore. I find a way to fit my work into my life, and not the other way around.

Because I’m still here. Right now. For however long that may be. And if I die young, I want my kids to remember that I was always there for them, no matter what.

In the end, that's what counts.

Abundant Joy

A few days ago, a dear friend sent an email to me telling me not to fear joy. She couldn’t have possibly known, and yet somehow she did, that for days I had been planning a blog post about how scared I am to be happy.

It sounds strange, I know. I’ve been working on a happiness project, I’ve been trying to make 2013 the best year ever, I am doing my yoga teacher training in pursuit of joy and peace, I took another year leave from the PhD to figure out what I really want, I launched my own home business to give myself more happy time with my children – everything that I have been doing in the last six months has been in pursuit of happiness. And yet I’m terrified of it.

In a way, I feel this fear is justified. Soon after I had my daughter, my husband and I were sitting together one blissful morning as my infant slept on my chest and my son played on the floor, and I said to him: “Isn’t it crazy? We have everything that most people want. A boy and a girl, a house, a car, very little debt, jobs we like – it’s amazing.” I felt like it was almost unfair, how we had so much.

Eight months later, I was diagnosed with leukemia.

Do I feel like I jinxed myself? Just a little bit. I will never forget making that comment. I play it over and over again in my head like a bad dream. I had everything I ever wanted, and then my life exploded overnight. So I am very afraid to be in that place again. I am afraid to allow happiness in, because I feel that it will just be ripped away. I am afraid to shoot for the stars because I might not be around long enough to get there.

Do I want to be happy? Absolutely. And in fact I am quite happy at the moment. That’s what scares me. I am happy and making plans and loving life, and everything could come crumbling down at any second. Every time I have pain in my back (like right now), every time I have a sore throat, every time something feels not quite right, I feel a lump of panic congealing in my throat. In fact, after I post this, I am on my way to the hospital to get bloodwork done because of increasing low back pain I’ve been having. It could be nothing. Or it could really be something.

And so I worry.

Other survivors tell me that this fades with time. I can only hope. I feel like every time I turn around, someone else I know, or someone else’s child or mother or brother, is being diagnosed with cancer. And every time I hear that news it’s a punch in the gut. When will we stop poisoning ourselves? When will we fix everything that is broken?

In that same email, my very wise friend sent me this verse: "Give us gladness in proportion to our former misery! Replace the evil years with good" Psalm 90:15 (NLT). I hope she is right. I hope that someday I do get my pony, and that the immeasurable joy that is coming my way will far outweigh the heavy sorrows of last year.

Another very dear and wise friend said to me that I might need to reframe my idea of success. We are conditioned to believe that we go to school, get an education in a field we like, and then (ideally) get a job in that field and we’re set. But that’s only one path to success. Just because my career plan exploded doesn’t mean that another one, a better one, won’t rise up to take its place. And I need to embrace that. I need to believe that I will have insane amounts of joy and success, whatever “success” may mean to me on any given day (and believe me, it changes). I need to believe that the ever-increasing light will far overpower the darkness that was 2012.

Because when you just keep waiting for the fall, you miss all the good things that are happening in your life right now. And I do have so many wonderful, amazing things going on.

I took my kids to the waterslides on Monday, and as we ran around I thought about my trip to the waterslides at this time last year. At that time, I was not allowed to swim because of the catheter in my chest, and because I was so weak all I could do was sit in a chair and watch. This year, not only could I go into the water, but I had the energy to do the entire outing by myself.

And that, my friends, is today’s version of success.

One

I am one year old. Well, my immune system is, anyway. It is weird to even write that, because I remember the day too vividly for it to be one year ago. I remember sitting in the hospital, sick and exhausted from vomiting non-stop for 48 hours straight (thanks to chemo, radiation and multiple drug cocktails), watching as they hooked up a huge bag of bone marrow to my central line. A bag of marrow from some mysterious heart-of-gold stranger. My husband and I watched in silence as the blood slowly, slowly made it’s way down the line into my body. I prayed that this blood would get along with my body, that my donor and I would live in harmony, that I wouldn't be permanently disabled from side effects. My musings were disjointed and unequal in gravity. I wondered if I would get new allergies. I wondered if it would be my last week on earth. I wondered if my celiac would go away and I could eat bread again. I wondered what exactly would happen to me if the new immune system didn't graft. Would I die right away? Would it take a few days, a few weeks? I realized that I had not said a proper goodbye to my children. Of course I hadn't.. Because I expected to live. All of these things went through my mind as the IV drip, drip, dripped into my veins.

One year later, I am healthier than I ever expected to be. While I still have challenges and take medications, I am able to be a full-time mother to my children. I do the things that I love. I was enormously blessed not to have suffered from any significant graft-versus-host disease. I know that many others are not so fortunate. I attribute it to prayer, a combination of conventional and naturopathic medicine, a perfectly matching donor, and my pre-cancer good health. But really, you just never know what outcome you’re going to get. So far, mine is good.

As I sit here writing this, I am eating banana bread, and not the gluten free kind. Indeed, my doctors were right. The transplant wiped out my celiac disease. (Celiac is an autoimmune disease, so when you replace the immune system, you wipe it out. Doctors are actually doing clinical trials using BMTs for all sorts of autoimmune diseases, but because the risk of mortality is so high, obviously the condition has to be pretty severe to warrant it.) But all that aside, I can eat bread. All it took was being decimated by the most toxic chemo-radiation one-two punch the human body can stand. Real bread. Heavenly. (And yes, I know it is somewhat ironic that just as everyone is going gluten-free I am going pro-gluten, but whatever. It doesn’t make me sick and it is delicious.) It is certainly not something I would recommend as a celiac cure, but at least I won something out of this whole nightmarish experience. Sandwiches.

So two days ago, we partied. I invited all the people who had supported and cheered for me over the last year (well, not all – there were people all over the world and they couldn't all be there!) and we gathered in a beautiful park and ate and laughed and chased small children around. It was a good day to be alive. It’s hard to imagine that I almost didn't live to see it.

I still don’t know what’s coming next. I am still terrified of a relapse. I regularly look at pictures of myself and inadvertently think, “Oh, that’s a good picture for my kids to remember me by.” I keep journals for both of my children of things that I want to tell them when they’re older, or things that they've done that only I will remember, just in case I don’t get that chance. I make every big decision with this thought: “If I’m in the hospital a year from now, will I regret this choice?”

While physically I feel fairly fit and energetic (until 7pm, that is, when I crash hard), mentally I struggle with concentration and focus. I feel permanently scatter-brained. (My husband tells me I was always a scatter-brain, I am only just noticing it now because I was too busy before. He may have a point.) I am hoping that will fade with time, otherwise an academic life is never going to be in my future. But maybe that's OK.

And even though I wish this whole screwed up year had never happened, this experience has opened me up to the tragic and courageous world of people scarred by cancer. I don’t say “touched” by cancer because cancer doesn't do that. Touch implies some element of gentleness. A disease that takes down three week old babies does not touch. It maims, it attacks, it scars. Cancer is not a gift. It is a serial killer.

Throughout this experience, I have had the honour of meeting amazing people who fight back. I have met courageous little boys and tenacious mothers, brave fathers and gritty siblings. They rally and cry and hug and endure. They laugh at things that really aren't funny. But sometimes there is nothing else to be done. They know how precious life is, and they fight for it. And I will stand alongside them.

Because this fight isn't ending any time soon.

Back of the Pack

With teammate Lisa Steele, at my first 5k post-cancer race

As many of you know, I recently re-entered the competitive (amateur) running scene, and with that came a return to my faithful coach, Ken Parker, and my beloved women’s running team, the Ottawa Athletic Club Racing Team (OACRT). Over the last year of recovery, I imagined returning to this team, which has boasted many of the fastest women in Ottawa. When I first started running with them, in 2009, I was almost always at the very back of the pack. I was often the last one to finish a race or workout, and I trained hard to edge my way up until by 2010, I was running mid-pack and broke 20 minutes in the 5k. 

But now, with all the setbacks that cancer brings, I find myself at the back of the pack once again. I’m not going to lie, this brings with it all sorts of difficult and conflicting emotions. On the first workout back, I was not even sure I would be able to keep up on the warm-up (I could). I told my coach that I would likely be a full minute behind everyone else on the mile repeats (I wasn’t). But I was still at the back of the pack. I was with the pack, mind you, but at the back. Again.

With my daughter
(and the cursed hat that cost me a sub-22 race)

When I came home from that workout and sighed to my husband that I was last again, he laughed. “Oh, you’re less than a year from your transplant and you’re at the back of a pack of the fastest women in Ottawa? Poor you.”

If you want sympathy, don’t cry to my husband.

It’s all about perspective. Sure, I was a little bummed to be at the back again, but I was also elated that I could keep up at all. When I ran my first 5k after cancer, in May, I was aiming to be under 25 minutes (seeing as I had not run one single kilometre in under five minutes since returning to running, that seemed like a reasonable if not optimistic goal). I shocked myself (and my family) by running 22:03. In fact, my husband missed my finish because he got to the line at 24:00 and thought something horrible must have happened to me when I didn’t show up by 30:00. Meanwhile, I was wandering around our meeting place wondering where on earth he was.

Yesterday, with a month of chasing the OAC ladies under my belt, I ran the Emilie’s Run 5k in 21:32. I was not remotely fast enough to win anything, obviously, and it was not anywhere near a personal best, but I was fifth in my age group, which to me was a shock (again). I am beginning to wonder if this is all because of my great hemoglobin levels, which, pre-cancer, were never all that good. I guess it's yet another thing I'll have to thank my donor for. (You know, that and my life. That's all.)

Some of you may have seen this article about me, so you know a lot of this story already. I find the entire thing quite hilarious, as I have never been a top athlete and could never have predicted that one day I would be on the front page of the sports section. On race day, random strangers who had seen the paper were wishing me good luck, and today on my trail run another stranger said: “Hey, are you that girl from the paper?”

En route to 21:32, a new PCPB
(post-cancer personal best)

As I count down the days to my one year bone marrow transplant anniversary (or, as I like to call it, my [re]birthday), all of these mini-victories are amazing gifts that I will never take for granted. Every day that I can run is a celebration. Yes, I am at the back of the pack. And yes, I may reach a plateau where side effects and decreased lung capacity dictate that my body simply cannot go any faster. We’ll see. But it really doesn’t matter. I’m not trying to win anything. I’m just enjoying being alive.

Although I'm pretty sure that at the race yesterday, I won the leukemia survivor category. That's a thing, right? 

Planning Schmanning

I am an obsessive planner. I always have been. I love to make plans, even if they never quite pan out as intended. Training plans, meal plans, weight loss/gain plans, career plans, school plans – I am a schemer and a dreamer. Lists, diagrams and charts are addictive little things. And then came cancer.(Ka-boom.) So now, as a previously incessant planner of all things, I am actually finding it difficult to plan a single thing. 

The future is tenuous for everyone. We know that. Anyone could die in a car crash tonight. But cancer survivors (and their families) feel that reality a little more acutely. When your whole life explodes with absolutely zero warning, you wonder if (or when) it will happen again. I wonder if my husband will get sick, or if my kids will, or if someone else I love will have a catastrophic accident. I no longer feel immune to tragedy, as I once did (but don’t we all, to some degree, until it hits us?). I had a lot of plans, mostly related to my PhD. But I also had baby plans, and plans to move to BC. And on diagnosis day, that was all blown to bits. 

Now, with nearly a year of recovery behind me, I feel this silent expectation that I will go “back to work.” One year, after all, is what they say you need to recover. But what does it mean to be “recovered”? Who measures? And with what? I don’t know if I’ll ever finish my doctorate. On the flip side, I’ve been in graduate school for so long that it’s hard to envision an alternative life. For now I’m taking a break. I think about planning the next steps, planning my fieldwork, and I feel exhausted. Then doubts creep in – why bother planning when my plans never work out anyway? Also, maybe it’s pure craziness to return to the same high-pressure, type-A life that I was living before cancer. Maybe this is a do-over. Maybe I should just give up planning altogether. Let the universe decide. Although… the last time I told the universe to “bring it on,” I got leukemia. (I’m not joking – that actually happened.)

But can we live life without planning? People are always asking me what I’m going to do next. (“So, you seem to have conquered this whole cancer thing. What’s next on your agenda?”) I often just shrug, and I can tell people are dissatisfied with that answer. We are, after all, a goal-oriented society. We don’t generally approve of aimless wanderers. But can we find contentment being in the here and now and not worrying about next week, next month or next year? My last big plan was to survive this year of recovery and regain my health and strength. So far so good. Gold star for me. But what next? If I don’t plan, then how will I know what will happen? How will I know what to strive for? And how, pray tell, will I measure progress? 

But the reality is, I can plan all I want, and I still can’t control the outcome.

I’ve found that a common thing for people to say is: “Just trust that it will all work out.” I am guilty of saying this many times myself. But for a cancer survivor, it is very hard to trust. It’s hard to trust anything after getting blindsided by such a trauma. It’s hard not to see terrible things lurking behind every corner. But I survived, you say. I had a donor. Therefore I should trust that all things are possible. Yes. I should. But the survival was not without scars. Not without loss. Not without permanent damage. And I’m still so early in my recovery that it’s hard to trust everything will remain well. I’m trying.

On top of a mountain!

So I plan tentatively, and not very far ahead. But one thing I never do is plan to be sick. I am prepared for the possibility, but I don’t plan for it. Obviously you get your affairs in order (I’m not that irresponsible), but that doesn’t mean you plan to be sick, just like you don’t plan to be hit by a car or blown up by a bomb one day. It could happen. I just assume that it won’t. If it happens, we’ll deal with it just like we dealt with it the first time, maybe even a bit better. (I would definitely shave my head sooner!) But if I only have a small amount of time left, I don’t want to waste it feeling anxious and depressed over an illness that might never happen. We don’t live that way before we get cancer, (or at least I hope we don’t!) so why live that way after? 

So don’t ask me what I’m doing next. I have absolutely no idea. I’d rather just live in ignorant bliss for a while.

The Race

Before cancer, I really loved trail running. I did a fair share of road races, but my real love was skipping over roots and logs on winding, forest trails. There is something about running in the woods that I find remarkably freeing. It brings back precious childhood memories of traipsing through the trees in homemade cloaks and wooden swords. All stresses melt away when I can run in the woods. So when I landed in the hospital and heard the word “leukemia,” I wondered, among many things, if I would ever trail run again.


On Saturday, less than one year from my bone marrow transplant, I ran my first trail race. My pre-cancer, type-A self would have been really amped up about the race, gunning for top five if not a podium placement. But my post-cancer self was remarkably calm, there for the fun of it, completely unconcerned with placement or time. I was just thrilled to be there. As long as I wasn’t last, I’d be happy.

Before my race, my two-year-old nephew and my four-year-old son both had their own races. Watching their little legs go as fast as they could over the finish line was almost as good as doing my own race. They were so pleased with themselves and their little finisher ribbons.


Afterwards, as I prepped for my own start, I ate a few energy gummies. My son, with his uncanny ability to spot junk food from 1000 metres, immediately saw them and asked for one. I acquiesced – one gummy, after all, was not a big deal. It wasn’t until after he had popped it into his mouth that I realized I had given him a caffeinated gummy. I quietly backed away and eased myself into the starting line, leaving any potential consequences for my dad to sort out.


The race itself was amazing. It was at Golden Ears Provincial Park and the scenery there is breathtaking. The course had crazy climbs and super technical downhills, so it was hard to go fast, and everyone’s ankles were in constant danger, but it was really fun. I kept playing leapfrog with these two other women who had different strengths from mine. I would pass one woman on the uphill, and then another would pass me on the uphill. Then I’d catch her on the downhill, and then the first woman would catch us both. And the cycle would repeat. This went on for the entire second half of the race, but in the end, I beat them both. I would be lying if I said I wasn’t a little bit pleased.


I had forgotten what racing was like. I had forgotten how much faster you can run in a race than you can ever run during training. I had forgotten how hard you can push yourself. In the last two kilometres I started to fade, but I kept reminding myself of my victory over cancer, and how this was my celebration of life, and suddenly my energy came flowing back.

When I crossed the finish line, I immediately burst into tears. No one was more surprised than I was. I sat down on a rock and just sobbed. I could tell people were looking at me funny. One of the woman I had been leapfrogging came up to me and asked what was wrong. I told her I was just happy, as I almost died a year ago. After briefly telling the story, I realized that I had essentially just told her that she was beaten by someone who could barely walk 11 months prior. I'm guessing she'll run harder next time.

Some people came and clapped me on the back in sympathy, even though they couldn’t possibly have known why I was crying. But I could imagine their thoughts from their quizzical expressions:

“Jeez, woman, it’s not a marathon.” Or “I’m sure your time wasn’t that bad.” Or “It’s not the Olympics, honey.” 

I tried to pull it together. But then I saw my dad and brother and burst into tears all over again. It was hopeless. Let them stare. Let them wonder. I’m alive. I raced. I wasn’t last. And I even beat some people. 

Victory lap complete.

Victory Lap

I came home to BC yesterday. I call it home because this is where I grew up and got married and lived the majority of my life, and this is where my heart is. Not a single winter has gone by since I left beautiful BC where I have not yearned for the green, mild days of January in Vancouver.

It was a strange homecoming, in a way, because I have not been back since I got cancer. I was here last February, when I was battling a reoccurring kidney infection and we knew that something was wrong. But we had no idea how wrong it was. It wasn’t until I got home and underwent a battery of tests and ended up in the emergency room that we realized I had been fighting leukemia for the entire time I was in BC. So now that I’m back, I’m flooded with a range of memories. Memories of waking up in my parents’ house, drenched in sweat and feeling miserable, but getting up anyway to nurse my daughter back to sleep. Memories of snowboarding with my brothers and falling a lot at the end of the day because I felt a bit “off.” Memories of an amazing birthday with my friends where I felt a little unwell and was battling a feeling of dread. Memories of going to Minneapolis to meet my new professors and getting cold sweats every time I had to walk somewhere. Memories of going to the walk-in clinic repeatedly for antibiotics until a doctor finally told me that I needed blood tests.

In retrospect, it is clear how unwell I was. But at the time, I thought it was just a bad infection that I couldn’t shake. And then the piano fell on me.

Coming back now is like a victory lap. On my first day back, I ran into the trails behind my parents house with glee, hopping over roots and logs, and running up the insanely steep road back to the house, not stopping even once for air. That, to me, was miraculous. I have hardly run any hills since I started running again, and my lungs have less capacity than they used to (thanks, radiation), so I had no expectation that I would be able to make that climb. And yet I bounded up with relative ease after already running hills for an hour. I really have no idea how.

I am going to run those trails again today, and tomorrow, and the next day. And on Sunday I am going to run part of the Vancouver half-marathon course with my dad to keep him company. After that I’m going to go trail running in North Vancouver and maybe do a hike with my brother. And then, right before I leave, I’m running my very first race post-cancer – a 14k trail race at Golden Ears.

Victory lap? Yes. A punch to leukemia’s throat? Indeed.