Don't Push It

I begin this blog entry with a sigh. I understand everyone’s concern. Yes, I almost died, therefore I should take it easy. Rest is important. I get it. But to be honest, if I hear “don’t push it” one more time, I might just freak out.

See, when I say that I am running five kilometres only five months post-transplant, most non-runners are amazed and, often, aghast. Five whole kilometres?! How can this be? To many non-runners, this is an unfathomable distance to run. Many people train for months to accomplish a 5k running race. So for them, it’s a big deal and a hugely strenuous effort. It makes sense, then, for them to think that I am pushing it.

My running friends, however, who have logged hundreds of kilometres with me, will understand why five kilometres is really just baby steps. Five kilometres is me not pushing it. I used to pound back half-marathons every single weekend without a second thought. I would click off five-minute kilometres as my easy, resting pace. Now, when it takes me over seven minutes to run one single kilometre, I am horrified. (Yes, running pals, it’s true. Seven minutes.) So for me, I am barely going faster than walking pace. I hardly feel like I’m running. I don’t even break a sweat. And then someone tells me “well…don’t push it.”

The same could be said for weight training. I recently joined a gym again, upon the realization that all the good intentions in the world would never materialize into me lifting weights at home. For four months I had been telling my husband that I would strength train at home, transforming my stick arms into bulging biceps and my spindly legs into trunks of steel. And for four months I never did. So I joined a gym with childcare and now I go twice and week and pump iron. I use the term loosely and with much glee. This skinny body “pumping iron” is hilarious. I couldn’t push it even if I wanted to. I do the machine circuits, lifting a fraction of what I once could do. I try to do push-ups and collapse onto my face. Baby steps.

On my first day at the gym, I was warming up on the elliptical beside a woman who struck fear into my heart. As I stood on my elliptical, not pushing it, she looked like she was attacking her machine. I was waiting for her to mutter, “Die, Elliptical, DIE!!” I didn’t dare giggle.

On my second day at the gym, I went to a “Bodypump” class, which is essentially a guided weight-lifting session with wild music and lots of excessive cheering. I had no idea what I was doing. When I got in, all the women were grabbing barbells and sliding weights onto them. I have never used a barbell in my life. So I did what any observant person would do – I copied and dutifully slid on some weights, then used the clampy thing to hold them on. I looked around me and tried to gauge how much weight I should put on the bar. That woman looked retirement age, so I could probably lift more than her (I couldn’t). That other woman looked really skinny, so she couldn’t be much stronger than me (she was). I grabbed all the other equipment that the other women were grabbing, plus a few extra things just in case and then music began.

Lord have mercy. I clearly put too much weight on my bar. The retired woman was kicking my rear end. I tried to find a good time to pause and take off some of the plates without looking like an idiot, but there was no pause. So I suffered through. Then the music stopped and the clanking of weight plates was everywhere. What was happening? I looked around in a panic – were they making their bars lighter or heavier? Lighter, thank goodness. But how much lighter? Since I had no idea what was coming, I had no idea what to do. So I guessed, again, and got it wrong, again.

Clearly I don’t know my own strength.

But then I told someone else this story, thinking it was pretty funny, and instead of encouraging me or being impressed that I even tried a weight-lifting class, that person said, you guessed it, “well…just don’t push it.”

But what I’ve realized is this: survivors push it. That’s how we survive. We push through chemo, we push the odds, we push our doctors, we push for treatment, we push against treatment. We don’t sit around waiting for death. We run from it. For five whole kilometres.

When I had pneumonia, I didn’t push anything. I sat on the couch or in the hospital and watched TV. I did nothing. And, within days, I became depressed and felt like a sick loser.

And that happened because running is not just exercise. It’s not just about getting your heart rate up and breathing hard. Running is transformative, it banishes depression, it makes you think that anything is possible, it makes you feel part of the living again. And that’s why I push it.

Let’s be honest. Runners, myself included, don’t always want to run. We don’t love it all the time. It’s cold outside. It’s snowing. I have an aversion to wind whipping in my face just like most of you. Most of the time I’d rather just have a hot bath and a nap. But where would that get me? Yes, I need rest, but I also need exercise, even more than the average person does: survivors who exercise (vigorously) have a much lower risk of relapse.

So I will push it, thank you very much. And I will keep running for my life.

Sick Loser

Some days it’s hard not to feel like a sick loser.

I like to think that I’ve been fairly plucky and optimistic throughout this cancer calamity, but then I got pneumonia and found myself back in a hospital bed, getting IV antibiotics.

And I felt like a sick loser.

Now, this is certainly no judgment on other sick people, though I’m sure they feel the same way at times. Nor is this a call for Facebook platitudes that say: “You are SUCH a winner!” Please refrain. I know that I am not actually a loser. But when you find yourself back in that hospital bed with the IV swoosh-swooshing and the hum of nurses giving chemo or blood transfusions to other unfortunate patients, you cannot help feeling, once again, ejected from normal life.

Like many other Type A overachiever personalities, I had big plans for myself before cancer. Plans to do Big Things and accomplish Important Stuff. But the problem is, I was only in the middle of doing Important Stuff when cancer struck. I hadn’t actually done anything notable yet. In my mind, anyway.

Sure, I’ve had two babies and so far they are turning out ok, so that’s certainly significant, but when your circle of acquaintances is chock full of highly educated, super overachievers too, then watching re-runs of Love It or List It for months on end is guaranteed to make you feel a little short of amazing.

What I mean is, I’m not a doctor fixing cleft palates, or a lawyer fighting for human rights, or a refugee camp worker giving rations to pregnant women. I’m not in the poor neighbourhoods of Ecuador interviewing girls on the street (which is what I would have been doing right now, if cancer hadn’t struck).

Now, I don’t know if I’ll ever be able to do something Great. With huge restrictions on my traveling, I don’t know if I’ll ever be able to finish my research, or if I even want to. I don’t know what I want to do when my health becomes predictable enough to actually work again. It’s really hard to see past cancer when you’ve been sick for nearly a year. I don’t even remember what my normal self feels like.

And that is certainly part of the problem. I have never shied away from hard work. When my high school drama teacher asked me to do a scene for an assignment, I did an entire one-act play. When I had a choose a country for my master’s fieldwork, I picked Colombia. When I needed to decide on a long-term career, I picked a PhD. Hard work is what I do.

Until I became a sick loser.

Now by the end of the day I can barely muster up the energy to cook dinner or sweep my floors. Change the world? I don't even change the toilet paper rolls. Everything I can think of doing is just too hard.

Finish my PhD? Way too much work.

Become a yoga teacher? Too much time.

Publish a novel? Too daunting.

Start my own business? Too complicated.

Become a professional trail runner? Too much training.

Become a professional clown? Too much makeup.

Become an actor? Too many auditions, too much work, too much everything.

Now I am not a lazy person, but cancer seems to have sucked all the drive out of me. Anything with the potential to make an impact in this world takes a lot of effort, effort that I do not have. And yes, of course I am recovering and of course I need to give myself time. But I have no idea how much time I have left.

So am I destined to be a sick loser forever? I sure hope not. But for now, being anything else seems like too much work.

Parenting Through

As I sit here reflecting (in the thirty minutes that I’ve luxuriously set aside for writing today), I have been trying to imagine what my recovery would be like if I wasn’t a mom. Do not misunderstand me – my children have been an enormous reason for my quick recovery and my ongoing will to survive – but I have a sense that the average cancer patient with young children goes "back to work” a lot sooner than the ones without children.

I will give you an example of what I mean. For the first two months after my bone marrow transplant, I slept until at least eight o’clock every morning. I had a nap every day, then I walked, wrote, read books, watched movies… sometimes I even managed some yoga or strength work. For the most part, I was a total sloth, and I needed to be. When the chemo and radiation are strong to almost kill you, well, they really do almost kill you. I spent as much time as I could with the kids, but after a while their noise and enthusiasm exhausted me and back to bed I went. I could afford to rest this much only because we had a full-time nanny and my parents were in town helping out (bless their exhausted hearts).

Those of you who are cancer survivors may be familiar with this phrase: “For the next year, recovery is your full-time job.”

Well… I hate to break it my doc, but starting two and half months post-transplant, when my nanny went back to school and my mom flew home, parenting became my full-time job. The doctors are very firm about not “working,” but they say nothing about parenting. And in my opinion, chasing after two energetic munchkins for ten hours every day is a lot more demanding than sitting at a desk for eight hours (and I’m not just ranting, I’ve done both. This is a very scientific comparison.)

So, even with part-time nanny help that breaks the bank, I am now up at six thirty every day. I make breakfast, pack lunches, sweep floors, put away toys, read books, end squabbles, drive to preschool, take the kids on nature walks, go to museums, go to the library, do laundry, make dinner and much, much more. I even made detailed spider and mummy cookies for my son's preschool Halloween party, and upon arrival realized that I had made the most elaborate cookies of the bunch. Now, I realize this is par for the course for any stay-at-home mom, but it isn’t for a recovering bone marrow recipient. There is not much room for “recovery” in this routine.

And let's add this little vignette: my son goes to a cooperative preschool, which means that each parent has a “duty day” every month. On this day, the parent is at the preschool for the whole three hours helping out. The duty parent must also bring the snack, serve it and clean it up, and then clean up the whole preschool (vacuum, sweep, bathrooms, etc.) at the end of the day. So there I was last week, exhausted from another night of insomnia, playing with a room full of four-year-olds, and then strapping my daughter to my back so that I could do all the cleaning afterward. I don’t even clean my own house right now, but there I was sweeping up sparkly sand with a twenty-five pound toddler on my back. One of the other moms, a kind soul who vaguely knows what I’ve been through, stayed with me and helped sweep. I must have looked as exhausted as I felt, despite trying to keep a brave and happy face.

I say this all not to complain – Lord knows there are people that have it tougher than I do. I do not, for example, have to cross the raging Mekong river on a precarious tightrope to catch dinner for my family (we’ve been watching a lot of BBC’s Human Planet around here). I simply share my stories to illustrate how different “recovery” looks when you have young children. I am sure there are thousands of women out there who have done the same. We are all “back at work” much earlier than the doctors prescribe, but it is rarely recognized as such.

Perhaps what I am not seeing is the recovery borne out of necessity. Perhaps if I were still allowed to sit around and watch movies all day, I would feel sort of listless and maybe even a little depressed at my lack of usefulness. Instead, there is little time for whining or even much self-reflection in my day. I am needed. I am wanted. I am busy. I often forget that I am in recovery and then become frustrated when I am so tired by the afternoon. In the brief respites I do have, I’m either napping or looking up recipes that might appeal to my ever-pickier four-year-old. By the time the kids are in bed, I flop on the couch like a fish that gave up fighting the net. Thank God I have an amazing husband who does all the clean up in the evenings. Otherwise we would all be neck-deep in dirty dishes, crumbs and leftovers, and, most likely, mice. No thanks.

Of course, while there are many days when I am proud of my ability to “parent through,” I do worry that the lack of adequate rest will affect my recovery. Like any cancer survivor, I am plagued daily with a fear that those nasty rogue cells will come back. I then fantasize a recovery without children, where I could get the rest I need – sleeping in, leisurely runs every day, hours to write, daily yoga, endless movies and novels…. It seems like heaven. Until I realize that in this scenario my children would never be there. You just can’t have it both ways.

The fact is, my kids give me the most powerful reason to live. And even though my son literally never stops talking, and my tiny daughter thinks it’s hilarious to smack me in the face, and even though the two of them can make a mess faster than you can say Tasmanian devil, I still would not trade places with a childless survivor for a second.

Well, maybe for second. Ok, maybe just for one day. But then I want them back.

One Hundred Days

Well, today is the day. Day One Hundred. As predicted, nothing incredibly epic happened today, aside from the fact that I took both my kids to Ikea, by myself, and we all emerged happy and unscathed. (Trust me, this was a big deal.)

I have learned a lot over the last few months, so I thought I would share a few things that I now know, after one hundred days.

1. Eyebrows and eyelashes are critical to looking human.

Laugh if you must, but without hair and eyelashes, and especially without eyebrows, we would all look like aliens (or like the Observers from Fringe). I can attest to this firsthand, after watching my eyebrows and lashes slowly disappear from the lethal pre-transplant chemo and radiation. My eyelashes didn’t completely fall out – I probably had about five lonely lashes on each eye. But try putting mascara on that – it looked like a spider got trapped and was waving sadly from underneath my eyelid. Now that my eyelashes are back, I spend a luxurious thirty seconds every morning curling them, just because I can.

2. What doesn’t kill you doesn’t always make you stronger.

Despite what many pop artists may claim, sometimes what doesn’t kill you just makes you really, really weak. Sure, I may be stronger in spirit (after being crushed), but my body is the weakest it has ever been in my adult life. Some parts of me are permanently damaged from chemo and radiation. I will be dealing with the fallout for the rest of my life. I choose to be stronger, but it wasn’t the radiation that made me that way. In fact, I found out later that the dose of total body radiation I received is one hundred percent fatal within a few weeks without “radical” intervention such as a bone marrow or stem cell transplant. (I’m glad I didn’t know that before I went under the beam.) That almost killed me - and I'm pretty sure it did not make me stronger.

3. To your kids, sometimes even 24/7 is not enough.

Now that I’ve regained a lot of my strength and am about seventy-five to eighty percent of my normal self, my kids cannot get enough of me. They have turned into barnacle babies. My daughter literally hangs onto my leg as I drag her around the kitchen trying to make breakfast. My son comes into our room in the middle of night wanting to snuggle. When I read stories, he burrows into me so hard that I think he is actually trying to crawl under my skin. I go to the bathroom and within seconds they are both banging on the door. All of this makes it very hard to balance my need for personal healing time and my children’s need for their mama. The kids win out almost every time.

4. There are many different kinds of tired.

I have now experienced too many of them. There is the “I stayed up all night to write a term paper” tired. Easy peasy. Then there is the “my son got up five times three nights in a row” tired. Not so easy. Then there is the “my daughter has been waking up every hour for the last two months” tired. Total hell. This is where you get into brain-cell killing fatigue. And then there is the “my doctors killed me and brought me back to life” tired. In my vast experience with sleep deprivation, nothing quite tops this last one. After three months, I am only barely shaking the all-consuming fatigue, and they tell me it will take a full year to recover. So… don’t call me after nine. I’ll be asleep.

5. I am not invincible

This may seem obvious, but until you almost die, I think most of us have an underlying, somewhat naïve feeling of invincibility. And by that I mean that many of us, including my pre-cancer self, believe that we are going to live until we’re eighty or ninety. We believe we’re going to watch our kids grow up and that we’ll dance at their weddings. We believe that we’ll be there to see our grandkids, and maybe even great grandkids. We believe that we’ll celebrate fiftieth anniversaries with our spouses. And then cancer comes calling and those beliefs come crashing down. Suddenly we are faced with death, faced with the unthinkable idea that we might not live until we’re eighty, that we might not even live until next year. I will never again be able to blissfully believe that I have all the time in the world. It is a type of innocence lost forever, and I wish I could have it back.

I have learned many other things, like how wonderful my friends and family are, what a strong person my husband is, and what incredible parents I have. I have learned how incredibly generous people can be. I have learned that I can be funny even when I don’t feel funny, and I’ve also learned that sometimes I am simply not funny at all. That’s ok. Cancer is rarely funny, we just make it seem that way so that we can survive it. And so far, I’m surviving. One hundred days and counting.

Reconstruction

I have less than three weeks before I hit the critical one hundred days post-transplant. I know that nothing epic will happen on that particular day (except perhaps a good celebratory dinner), but it is still a hugely important milestone.

For one thing, it means that I will be out of the most acute recovery zone. I will not be “out of the woods” so to speak (that takes years), but I will be able to get off most of my medications and live a bit more normally.

And by “more normally,” I mean that maybe I can eat a breakfast that is bigger than the mountain of pills I take each morning. Maybe I can pull my wallet from my purse without a vial of heparin popping out onto the counter. (Yes, that really happened.) Or perhaps I won’t have to explain to perfect strangers who just had to know where I get my hair cut that it’s actually a wig.

But reconstruction is one tough gig. First there are medications, supplements, green smoothies, huge salads, and litres upon litres of water. Then, to gain weight, there are avocados, hemp seed, peanut butter and protein shakes. Then, to gain muscle, there are lunges, squats, sit-ups, bicep curls, hikes, walks, and the infamous shuffle. And, to gain everything else, there is prayer. There is always, always prayer.

I will readily admit that on some days I just sit around and do nothing. I skip strength training sessions just like I did before I was sick (it has never been my favourite thing). But I cannot be this hobbling, weak waif forever, and not only because I am way too old to start a modelling career. So I walk, I eat, and I lift my paltry two-and-a-half pound dumbbells. (Yes, you read that right. I have been reduced to weights that my grandmother could probably juggle.)

This is all very humbling for a woman who once ran over seventy kilometres a week, did power yoga, and hit the gym on a regular basis. It is very tempting to wallow in self-pity and stay on the couch watching The O.C. re-runs (don’t judge). But I walk my forty-five minutes almost every day. Some days I get pretty far in those minutes, other days I don’t. Some days I even run-walk. It can be a monotonous grind, but on those days, I just remind myself of the time in the hospital where I couldn’t even stand up. I remember that and think of the people still on the ward, and I keep going. I have a chance now to rebuild myself the way I want – from skin and bones to muscular and fit – and who gets a chance like that?

So I pray and meditate and try to figure out where my life went wrong. Regrets come in hard and fast. What if I had done that, or this? What if I had not done that? I try to remind myself that this cancer is not my fault. Sometimes that’s a hard thing to remember.

I rebuild in teeny tiny pieces. There are days when I hate it, when I am sick of being so tired and weak. There are days when I wish I could erase it all and be in Ecuador where I was supposed to be this fall. But most of the time I try to live where I am. I cannot change what happened, but I can reconstruct myself. And that’s exactly what I’m going to do.

Bows and Marrows

My son asked me the other night if my “blood cell factory” was working again, and that reminded me of this blog post – one I meant to write long ago but didn’t. I just couldn’t.

Talking to children about illness, after all, is not something in which I am an expert. In fact, when the social worker gave me a book titled “When a Parent is Sick,” I instantly recoiled. We were not that family. And yet, devastatingly, we were.

The book was a knife to my stomach. It had ways to explain death and dying to children of every age. I nearly tossed it across the room. I was not going to tell my four-year-old that his mommy might die. That was simply not happening. But I didn’t want to lie to him either. He was old enough that he should know what’s going on. Besides, he is very clever and a master eavesdropper. Eventually he was going to pick up on what the grown-ups were saying.

So I sat him down to have “the cancer talk,” admittedly very angry at God that I had to have this talk at all. But we all have our roads to travel, and this was mine. I had found a video online from a children’s hospital that explained leukemia with all types of candies, and then I found another video that explained bone marrow (calling it a “blood cell factory”). My son looked from me to the videos, wide-eyed and nearly silent the entire time. Clearly he knew this was serious business, because for my son, being silent at any time is practically miraculous.

Finally I asked him if he had any questions.

“Do I have leukemia?” He asked. The mere thought of it tore my heart in half.

“No, baby, you don’t have leukemia. It’s very, very rare. You are not going to get leukemia.”

“Does Daddy have leukemia?”

“No, baby, Daddy doesn’t have it and he’s not going to get it.”

“Well then why did you get it?”

This was the part I was dreading. I could not explain to my son why I got leukemia because no one knew. I couldn’t explain to him how he could avoid it, or how I could avoid getting it again, because no one knew. It was infuriating. All I could tell him was that it was very rare. But how does a four-year-old understand “rare”? His mommy and daddy are his whole world. If Mommy can get it, then half the world can get it too.

But he seemed to accept my attempt at answers for the time being. We watched the videos again (upon request), and then he only had one more question:

“Mommy, when do you get your new bow and arrow?”

Well… I did my best. Clearly I couldn’t expect him to grasp it all. And I should have known that he would somehow turn it all into a weapons issue.

Come to think of it, I never did get any new weaponry along with my transplant. Perhaps now it’s time.

Random Hospital Hilarity

This blog would not be complete if I didn’t include at least one entry of random moments in the hospital that were simply too funny to keep to myself. I love people-watching to begin with, but people-watching at the hospital is pure gold. Sure, there are weird people everywhere, but people at the hospital are an entirely different level of weird. (You nurses especially know what I’m talking about.)

One glorious example happened when I was waiting to be picked up at the main entrance. First, there are No Smoking signs plastered all over the entrance, and the smoking area is across the parking lot. Second, people often violate this rule. Third, on this particular day, I was very cranky, and I have little tolerance for smoking at the best of times.

So… I was waiting for my ride and I smelled smoke. This made me irrationally upset and I immediately looked around for the culprit. I saw a woman smoking about three metres away from me, right underneath a No Smoking sign.

I went up to her, extremely annoyed at her disregard for the sign.

“Excuse me, lady,” I said, a tad too sharply. (Yes, I actually called her “lady.” Like I said, I was cranky.) “You cannot smoke here. There are tons of sick people waiting for rides and we are all inhaling your smoke. Besides that, you are standing right in front of a No Smoking sign.”

She half turned, but didn’t make eye contact, and said, “I’m blind. I can’t see the sign.”

Yes, this really happened. I had practically said, “Can’t you see the sign?” to a blind woman. I wanted to dissolve into the sidewalk. At least ten people had seen this go down, and I went from vigilante no-smoking enforcer to the woman taking a strip off a blind lady. It was mortifying. After I took a few seconds to recover, I helped her over to a different area where she could smoke (because God forbid she would actually put out her cigarette).

Not even five minutes later, a different woman came out of the entrance and asked me if I had a cigarette. I burst out laughing. I was at a hospital wearing a scarf on my head in forty-degree heat. I was clearly a cancer patient.

“Did you just ask me if I had a cigarette?” I asked, dumbfounded.

“Yeah,” she snapped. (I guess I wasn’t the only cranky person that day.)

I laughed and gestured to my scarf. “Do I look like someone who should be smoking?”

She just stared at me blankly, still waiting for an answer. Clearly her observational skills needed some more development. So I directed her to go join the blind lady in the designated smoking area.

Not to be outdone by those two fabulous women was the young man in his twenties with whom I had the misfortune of riding the elevator. He was wearing a zip-up hooded sweatshirt, fully unzipped, with no shirt underneath. He had a sideways ball cap and matching sweatpants on, and a tube was popping out from the waistband of his sweatpants, running down his leg and straight into a bag of urine that was dangling from his ankle. In fact, his pant leg was hiked up so the bag was fully visible and hanging free. Yet he walked out of that elevator like he owned the place, pee bag or not.

He was going the same place I was, so I ended up following him outside where a group of friends was waiting for him. I have to wonder – if you are meeting some friends that are kind enough to visit you at the hospital, would you not go to a little trouble to hide your bag of pee? Quite the contrary, it seems. This young man immediately pointed out his urine to his friends (as if they could have missed it), and went on a very spicy rant about how the nurses kept telling him that he “didn’t know how to [insert gratuitous swearing] pee.”

This man was not letting the hospital wreck his swagger, I’ll give him that.

So there you have it. Nothing profound today, just random moments of hilarity from the hospital. If you are ever bored, or if you are a writer or actor searching for a new character, I would highly recommend the main entrance of any hospital. I am quite sure you will not be disappointed.