Reality Check

Perhaps I was due for a reality check. All the running, yoga and weight training I’ve been doing, not to mention regular life chasing around two young kids, had lulled me into the false belief that I am now just a normal person. Good as new. My blood work has been so perfect lately that the doctor said you would never know that I had a transplant. So it wasn’t until my fourth day of vomiting that it even occurred to me to call the BMT clinic.

I left the nurse a message that went something like this: “I’m not sure if I still need to call you about these things, but I’m just letting you know that I’ve had a really bad gastro infection for the last few days.”

She called me back, saying: “Yes, you still need to call us about these things!”

Oh. OK. A normal person I am not.

In fact, they were so concerned about my weight loss and inability to eat that they brought me into the hospital clinic, warning me that I might be admitted if my condition did not improve. Admitted? Were they serious? Who gets hospitalized from a run-of-the-mill gastrointestinal infection?

People with compromised immune systems, that’s who. People like me.

“If your electrolytes aren’t good tomorrow, we’re admitting you,” the nurse told me on the phone. So I had exactly twenty-four hours to whip my depleted electrolytes into shape. I stopped at the store to buy some Gatorade, only to realize that orange juice is a way better source of potassium, and without the artificial colours and processed sugars. So I spent an entire afternoon and evening consuming quantities of orange juice, potatoes and bananas only suitable for an elite marathon runner before the Olympics. It wasn’t until the next morning that a friend pointed out to me that I could have just bought potassium pills. Oh. Well, darn. A week of not eating certainly diminished my thinking capacity.

Thankfully, by the time I saw the doctor my condition had improved and they did not admit me. But the whole episode was an unwelcome reminder that I am not as normal as I’d like to think. It’s pretty safe to say that all of my friends and family have been treating me like a regular person, which is how I like it (I’d rather not be treated like a sick person). And besides, how else do you treat someone who regularly runs fifteen kilometres at a time? I clearly don't need help carrying the groceries. But the truth is, I am only nine months out from my transplant. And I am acutely, painfully aware that only half of all stem cell/bone marrow transplant recipients survive five years past their transplant. Only then will doctors use the word "cured." I’ve got a long way to go.

So I may seem good as new, but I’m really not. My entire immune system died and was replaced by someone else’s. Besides being traumatized by near death and all the invasive tests and treatments, I now have to live with permanent side effects. When I asked my doctor if I needed iron supplements to bring my hemoglobin up, she smiled at me and said: “Those are someone else’s red blood cells trying to live in your body. Nothing but time can bring them up.” I will always be more susceptible to disease and fatigue. I have chronic insomnia. I cannot focus. I am more prone to cavities and bone loss. (In fact, my dentist just told me today that I should use prescription toothpaste. Who knew such a thing even existed?) My ovaries will never work again and, as a result, I have to be on hormone replacement therapy for the rest of my life. This, along with all the chemo and radiation, puts me at greater risk for secondary cancers. In short, I am damaged goods.

But you can’t feel like that on a regular basis because if you do, your body will start to believe it. And if your body believes that it’s damaged, it might just give up on you. There's a Chinese proverb that says: he who imagines bad things happening, experiences them twice. We can't foresee the future, so there is no reason to expect the worst. Now I don't mean I'm going to start spouting Pollyanna platitudes. And I'm still scared of a relapse. But studies show that patients with the most positive expectations have the best health outcomes. So I have to believe that I will heal, that I will make it, that these setbacks are temporary and that one day I will feel like myself again.

Of course, right after I recovered from the gastro nightmare, I woke up with a vicious head cold. On some days I certainly feel more damaged than others. And on those days I make friends with the clerk at our wine store.

Bottoms up.

Move On

I’ve been really sick this week with a terrible gastro bug, and I’m a little embarrassed to admit it, but in my boredom between bouts of vomiting, I became totally hooked on the Biggest Loser. (No need to mock me for this, my husband has already done enough of that for everyone.) Now those who know me should know that I don’t tend to watch reality TV. They also know that I am not (nor ever have been) overweight. In fact, with all the puking I’ve been doing this week, I’ve got the opposite problem – I lost most of the weight I worked so hard to gain in the last six months. So the appeal in the show is obviously not that it’s inspiring me to lose weight. I recognize that it’s a little strange for a skinny person to relate to the struggles of the overweight. But the appeal is watching how hard these people are working to change their lives for the better. They fall off treadmills and get back up, they twist ankles, break bones, throw up. And they get back up. It brought to mind all the shuffles I’ve done, the Bodypump sessions, yoga classes, and all the long runs in -24 to get my body back to health.

Blood, sweat, and tears, baby. 

These inspiring contestants often lose the equivalent of entire people (one man lost nearly the exact weight that I am now – imagine, me, hanging off your back as you go about your life. It’s crazy). They are hoping to never go back. And this got me thinking about what I never want to go back to.

First off, being sick this week has been a horrible reminder of how sick I was during chemo. I cannot wait to recover from this and get back into the gym, into the yoga studio, and onto the roads and trails. There is nothing like being sick for a year to appreciate everything that a healthy body can do for you. I feel like I just can’t get enough movement, enough deep breaths, or enough sweat to make up for all those days in a hospital bed. I’ve signed up for a half-marathon this fall and for trail races this summer. I will not be held back by the hell of 2012.

Second, as I watched the contestants say goodbye to their unhealthy, overweight selves, I thought about my old pre-cancer self. Who do I want to get back, and who do I want to leave behind?

Obviously I want my health back. I never want to be a sick person again. I never want to be in a hospital again. And I want my brain back. All the treatments, side effects, and time off from thinking have turned me into intellectual sludge. I frequently have no idea what’s going on in the world, I don’t remember things, and I struggle to focus on anything for more than thirty minutes at a time. So I would like those parts of me back.

But I don’t need the high-strung, overachiever, over-stressed part of me back. She can stay back there.

I sense that keeping her there will be as much as a struggle for me as it is for the show’s contestants to leave their overweight selves behind. She is a deeply ingrained, slightly dysfunctional and definitely neurotic, part of me and she wants me to be better, to do Big Things, to be successful. She pushes me to work too hard, and to strive for things that are Important but don’t make me happy.

I suspect that everyone has a version of him or herself that they want to leave behind. Whether or not you’ve survived a life-threatening illness, we all have a part of us we don’t want hanging around anymore. That girl who was stuck in a dead-end job. That guy who couldn’t escape an abusive boss. That child who could never stand up to the bully. That mom who could never lose the weight.

And I say if you've had a second chance, if you've shaken that person off, then never go back. Keep that door shut. Lock that person out. Put that cupcake down. We have to remember what makes us happy and keep out the demons trying to destroy that.

So move on, baby. Move on.

Into the Quiet

One year ago, my life exploded. It wasn’t just falling apart, it was in a million pieces. All of my carefully made plans disintegrated. All of my hope for the future fell onto the floor. And I was thrown into chaos. Doctor’s appointments, medications, therapy, lung tests, heart tests, x-rays, CT scans, bone density tests, chemo, radiation… the list is endless. It was a whirlwind of treatment and the most extreme of emotions. And while I had lots of rest, I never felt rested. My mind was never quiet. What did I regret? What did I treasure? Would I die? Would I be chronically ill or disabled? And if I didn’t die, what would I do next?

With the one year anniversary of my diagnosis now passed, I have a pressing, urgent need to get quiet. Something was lost during my cancer battle, an innocent, optimistic, invincible part of me that I would like to get back. But another part was also lost, the busy part of me, the driven part, the part that wanted success at all costs. And I don’t miss her.

So I’m going into the quiet.

Part of the reason that I wanted to do my yoga teacher training was to have something to strive for. I flounder when I don’t have a goal, but I wanted a goal that was gentle, achievable and, yes, quiet. I have a tendency towards overachieving, and I know that diving back into my PhD at this stage of healing would almost surely kill me. Now that I’ve survived this year of diagnosis and treatment, a year that left very little room for self-reflection, I want a year of true healing. This might mean different things to different people. For me, it means yoga, running, nutrition, family, friends, and God. And not much else.

But there is a problem with being quiet. I’m loud. I am an unapologetic extrovert. I eat too fast. I like running hard. I love being busy and I love to talk. Being quiet is not in my nature. My mom used to say: “We’re right here, Rachel, you don’t need to shout.” Now I say the same thing to my son.

And yet, in these days after cancer, all I want is to be quiet. Truly against type, I would love to go to one of those spiritual retreats where you don’t speak for an entire weekend. It must be my donor’s immune system taking over – maybe he is an introvert.

But in my search for quiet, I discovered that I’m terrible at meditating. Really terrible. I sit down and try to meditate and my mind jumps around like a chattering monkey, latching onto any thought and bouncing it around my head like a pinball. I may not be speaking, but I am certainly not quiet. This is where yoga comes in. With the right teacher, I don’t think during a yoga class. I breathe, I adjust my body, I work through the flow, and my head clears. It is a moving meditation, and I get into the quiet spaces that have eluded me since the doctors said the word leukemia.

So doing the yoga teacher training wasn’t really a career decision – I don’t know what I’ll do once I’m done. I still haven’t ruled out the PhD. Rather, the yoga training was a spiritual decision. A decision made to support my healing, my quest for quiet, and my longing for true rest after a year of total hell.

Who knows? Maybe after all of this zen I’ll turn out to be a quiet person after all.

But I doubt it.

Making Sense (Or Not)

Tomorrow will be exactly one year since I was diagnosed with AML. Happy Anniversary to me. It has been a year of extremes. Extreme pain, extreme exhaustion, extreme perseverance, extreme relief. Moving forward, I hope, it shall be a year of extreme happiness.

So far my happiness project is not going exactly as I had planned. It turns out that chronic insomnia is a severe impediment to feeling happy. Let’s just say it’s difficult to be cheerful with your children at 6:30am when you’ve been up since 4:30am, especially when you can’t drink coffee.

So how do you choose to be happy anyway, when every fibre of your being is limp with exhaustion?

I'm trying to keep my eye on the prize. The first month of my happiness project went fairly well – I exercised more and drank green smoothies and tried to be tidier. February was also a qualified success. I had more dates with my husband, played laser tag with friends, did more yoga, and actually went on a child-free snowboarding weekend with the love of my life. We definitely had more fun. (Though, admittedly, having more fun than we did last year is not all that hard to do.) Throughout all of this, however, I was utterly exhausted.

And now it is March. My goal for this month was to focus on my career. I have some major decisions to make, decisions that are difficult to do with a muddled brain that hasn’t really slept since 2008. How smart could I be, I wonder, if I got the sleep that I really need?

But I can’t get that sleep and I can’t think rationally. After months of making myself crazy trying to make a logical decision, I gave up. I made a decision purely from the heart. I decided to enrol myself in yoga teacher training. I have no idea what I’ll do when I’m finished – my brain can’t think very far into the future right now. But it just felt like the right thing to do. It felt like something that could heal me. And for the last seven years I’ve been making decisions with my head while stifling what my heart wanted. I’ve been doing what “made sense” even if it didn’t make me happy.

I am acutely aware that I could land back in the hospital at any time. Any plans that I make, any decisions that I land on, could blow up right in my face. Why agonize over the planning? It’s all so tenuous anyway. So from now on, I’ve decided that I will no longer make sense. All decisions, all the time, from the heart.

Let the crazy begin.

What Not to Say

I thought it might be helpful to put together a little guide for those of you who may come into contact with seriously ill or recovery friends or relatives. All of the things below have been said to me at one time or another. If you have said one of these things, don’t feel bad – it happens. I’m sure I’m guilty of a few of these myself. But now you can’t say you didn’t know better.

1. How was chemo? (Or even better: “How was the transplant?”)

It was awesome. Best time of my life. I didn’t have to cook, clean, take care of my kids, work out, have dates with my husband, go out with my friends, do my hair… it was like a vacation! Seriously, though, you already know it was awful, so don’t ask this question.

2. You look tired.

I’m sorry, you must have meant: “Can I get a you a coffee or tea?” Or, even better: “Can I clean your kitchen while you have a nap?”

3. If I got cancer, I would never have chemo. It’s so toxic.

Chemo is toxic?! So that’s why I lost twenty pounds and my hair fell out.

4. I know how you feel.

Unless you really do know how it feels to have a cancer diagnosis, steer clear of this one. Patients on steroids are known to be particularly grumpy, and, well, they’re on steroids. They might just kick your butt. So tread carefully.

5. Just try and be positive about it.

Cancer sucks. And of course we need to stay positive and be optimistic, but if your cancer-stricken friend is having a bad day and wants to rant and wail about how much it sucks, let her. Even better, rant and wail with her. Strange as it might sound, it actually really helps to have another person acknowledge how much cancer sucks. Yell it from the rooftops. Use some swear words. Smash some things. You’ll both feel better.

6. Don’t Push It

I’ve already been over this (see this entry). If we want to push it, we’ll push it. When we need to rest, we will. Trust us.

7. Do you have any plans for the summer?

A nurse at the local clinic (not a leukemia nurse) actually asked me this two weeks before I was scheduled for my bone marrow transplant. The idea of planning anything in the future once you’ve had a cancer diagnosis is paralyzing and incomprehensible. After I managed to stop laughing in a crazy-person sort of way, I told her that yes, I had big plans to survive.

8. Can I see your (bald) head?

Oh sure! Snap some pics and post them on Facebook and Instagram. I love being bald, that’s why I show it off all day long. Oh wait, I don’t.

9. It’s just terrible, everything you went through.

Saying this once is ok, saying it over and over again is not. We don’t need to be reminded how terrible our experience was. In fact, we don’t want to be reminded of it at all. A better option: tell us about your annoying boyfriend or your crazy aunt or your leaking roof. It may seem odd to vent to your sick friend, but sometimes it’s really nice to get the focus off the illness.

10. You’re lucky you’re so skinny.

That’s not what I would call it. Sure, being skinny has its perks, but I’d take back those twenty pounds in a heartbeat if it meant I didn’t have to live through cancer. To be safe, never ever call a cancer survivor “lucky.” Unless of course they win the lottery. Then it’s ok.

Where's My Pony?

I have learned a few things in these first few weeks of my happiness project. One, it is hard to be happy when your kids consistently wake you up at 5am. Two, I need goals in order to be happy. Three, nobody buys you a pony just because you had cancer.

Being a full-time mom is rewarding and productive, of course, and I don’t mean to take away from that. But it is also repetitive and crazy-making (all you loopy moms know what I mean). I need something outside of motherhood, something that is just mine, something to work towards that makes me feel like a productive member of society, rather than just a sick person cashing disability cheques.

In my experience, not many people talk about the aftermath of cancer. Six or seven months after treatment, if all is going well, most people outside your closest circle will sort of forget that you almost died. People treat you normally again, you have to get up in the middle of the night for your kids again, you can’t sleep in anymore, and no one cooks you dinner. You are “better.” You keep waiting for that cancer card to pay you back big time (it must be good for something, right?). But there’s no pony, there’s no kitten, there’s no all-expenses paid trip to Hawaii. There’s just regular life. You are surviving, living life, taking your medicine. And then, one day, you realize that you almost died.

Our society is mired in what an acquaintance of mine called the “tyranny of positivity.” We are entrenched in this mindset that if we allow negative thoughts to occur, we are inviting calamity, as if we have that much power. So we push sad and angry and scary thoughts to the side, convinced that by staying positive we can cure ourselves. Then, when the immediate crisis is over, when life gets back to normal and we no longer look like aliens, and people start treating us like regular human beings, everything that we’ve pushed aside and refused to think about comes crashing down.

The aftermath.

I almost ceased existing. I almost left my children motherless. I almost became ashes in the ground. But I didn’t. And so I should be happy, right? I should be immensely grateful and I should be full of bliss that I can spend every day with my kids. Knowing that stress fuels disease, I should be totally Zen, full of calm and peaceful energy. Right?

But surviving cancer doesn’t automatically turn you into a better, more enlightened person (I really hoped it would). I am besieged by flashbacks. I am on edge a lot. I get frustrated with my kids. I can’t watch hospital shows. I feel sick when a child loses a parent in a movie. I cry. I thought that I had weathered my cancer journey quite handily, so I am a little unnerved to have it come back with such a vengeance. This does not fit in with my happiness project at all.

So I have to ask, where’s my pony? What do I get for all of this suffering?

Well, I guess I get another chance to get it right. I am not automatically more Zen, but that doesn’t mean I can’t strive to be. I didn’t die of a sudden aneurysm or a car crash – I kissed death and lived to tell the tale. So I get to try again. Some people say that cancer’s a gift, and just so we’re clear, I want to punch those people in the throat. But if you survive cancer, it does give you a second chance, a chance to start over, correct mistakes, and to be better.

But to be perfectly honest, on some days I’d rather just have the pony.

Paying Attention

This is the first month of my happiness project, and I decided to follow Gretchen Rubin’s lead by choosing energy as a theme, hoping that the results will bleed into the rest of the year.

I already have the exercise aspect handled, so I won’t go into that (though if you are doing this project too and don’t exercise, I would highly recommend tackling that first). I am approaching energy in several ways, including going to bed earlier, cutting out caffeine and alcohol (for the most part – I can’t quite give up that Saturday night glass of wine), drinking more water, going vegetarian, and making my super-green-super-clean-super-healthy smoothies every morning. I must admit I have a bit of an obsession with my green smoothies. While I was going through chemo I never felt like eating breakfast, so I would sip on a smoothie packed with berries, spinach and kale (the berries overwhelm the kale flavour, I swear). Then for a while, out of laziness, I abandoned the smoothies, but I always felt strangely guilty about it. My blender sat empty and accusingly on the counter. I felt as if, somehow, the consumption of blended green goodness was my vanguard against a relapse.

Of course, while I know that green smoothies will likely not be the thing that makes or breaks my health, they do deliver a pretty strong punch of nutrients and healthy energy, and they give me an extra serving of greens that I would otherwise not have (because really, who wants spinach or kale for breakfast?). And a body recovering from chemo needs all the nutrients it can get. So I’m back on the smoothie train.

Another thing I am especially focused on to clear my brain and improve my energy is clutter. I find mess and clutter to be extremely draining, and I cannot relax in a messy house.

The problem with this is that I am terrible about putting things away. I take a week to unpack a suitcase, choosing instead to live out of it until it sort of unpacks itself. I do the same thing with clean laundry. I leave clothes and papers and books lying around everywhere. But I hate it when things are lying around everywhere. Clutter makes me crazy, though I have this irritating tendency to create it. I am certainly not the only one at fault – my children are mess makers, as children usually are, and my husband has a knack for scattering mail and bills and magazines on any available flat surface. But as the adult who spends the most time at home, I am by default the main “house keeper,” and so the clutter control falls to me.

But what to do? I am not by nature a tidy person, but I love it when things are tidy. My solution is usually to cram anything into a drawer, any drawer, so that I at least don’t have to look at it. This results, obviously, in crammed and messy drawers that make me nearly cry with despair every time I open them.

And then, in the shower one morning, I grasped the very obvious solution. Mindfulness. I simply must pay more attention. You see, I am a fairly absent-minded person. In fact, while I was doing my PhD, my husband used to claim that I was the perfect “absent minded professor.” I realize now that I am messy because I ignore things, I don’t pay attention, and I don’t put things where they belong. So, instead of walking past that pile of clothes six times in one day, I shall take the five minutes and put it away. Instead of lamenting that my kids’ gloves and boots are all over the hall, I will quietly (and cheerfully, of course) put them away. Or better yet, I will enlist them in the task. Gretchen Rubin refers to this, in part, as her one-minute rule. If something will take less than one minute to complete, she’ll do it right away. To this I’ve added my two-minute rule. If I have a two-minute pause where I’m doing nothing, I quickly gather up things and put them where they belong. I don’t have big chunks of time throughout the day, but I have certainly have two minute windows. My house is not pristine after these efforts, but I can attest that it is certainly less messy.

I also did a trip to Ikea and stocked up on baskets and various boxes to organize our avalanche of belongings. It is mid-January and I still haven’t actually organized any closets, but it’s coming, I’m sure of it. Maybe I’ll tackle a closet right after I write this. Maybe.

Finally, I’ve taken Rubin’s advice to “act the way I want to feel.” That is, when I’m feeling tired in the early afternoon but still need to entertain my kids, instead of lying amidst the Duplo mumbling “I’m so tired,” I’ll do something especially energetic, like taking them outside or building a fort of blankets. This seems counter-intuitive, but it really does work. The activity requires me to wake up, I have more fun, and in the end I’m less tired than if I had lain on the couch inventing games that don’t require movement.

So, with all of these changes, am I remarkably more energetic? Well, I am doing more, so I’m having more fun, but I am expending more energy. I haven’t quite found the right balance. I was complaining to a friend recently that I had been super tired this week, right after telling her that I had just added two more runs per week and had run 11 kilometres that day. She looked at me quizzically: “You don’t have a very good gauge of when to stop, do you?”

I don’t. I never have. But I’m working on it.