Tough Love

I should know better than to plan. Honestly, I should just sit back and let the river of life take me where it will (even if I usually end up on the rocks), because absolutely nothing that I plan ever turns out the way I thought.

Cheers to a healthier home.

Case in point: last week. I was finally feeling better on Wednesday and planning to catch up on neglected suitcases, housework, laundry, yoga, and writing, when my son’s school called to say that he had a head-to-toe rash (oh and by the way, they added, there was another outbreak of scarlet fever at the school). So my plans were a puff of smoke, and we spent the next three days at the doctor, at the pharmacy, doing laundry (anti-bacterial cycle, anyone?), playing board games and watching cartoons. 

Work? No. Workouts? Definitely not. Two days later my daughter spiked a fever and I was back at the doctor, the lab, and the pharmacy. As if the flu, norovirus and pneumonia had not been enough, we now have scarlet fever and strep throat in our house. (Let’s just say that we’re currently bathing our children in Purell.)

Case in point, number two: my epic triathlon adventure. I wanted to make a great story. I wanted to do something that post-BMT people almost never do. I wanted to see what was possible after being a deathly, emaciated spectre and coming back to life with new DNA. So I signed up for a triathlon without owning a road bike and without the ability to run (high mileage + osteopenia = pelvic stress fracture). When I committed to the event, I was so terrified and thrilled and inspired, that I forgot about setting realistic goals. (Apparently I also forgot to tell my husband. Oops.)

The training was going well (except for the running part, which was not), only… I was exhausted all the time. Friends (and my mom) were getting worried. Constant 6:00am workouts were wearing me down. I was relying on coffee to get me through the day (not ideal if you're osteopenic). But I had a goal, darn it, and I kept going. I was inspiring people, or so they told me, and that encouraged me. And yes, I pushed it, because that is what I do. I was committed, so stress fracture or not, I wasn’t stopping.

Until my body stopped me.

As you know if you read my last post, I ended up in the hospital for IV antibiotics due to pneumonia a few weeks ago. I’m feeling a lot better now, though the fatigue persists. When I went in for my follow-up two weeks ago, my hematologist asked what I was up to these days.

When I told him about my training (and mistakenly mentioned the stress fracture), he sighed. “You can’t do that race.” This is a doctor that I like and respect a great deal – he has always been straight up with me and has been at my side since day one – but in that moment I wasn’t feeling the love.

“Of course I can!” I replied (I’m not great with authority). “It’s not until the end of March. Obviously I’ll be better by then. It’s not like it’s an Ironman.”

He sighed again. “Look, most people who are eighteen months post-transplant are just trying to get by. Many are hospitalized frequently. They are not chasing after two little kids, starting businesses, becoming yoga teachers, writing books, training for triathlons and whatever else you are doing. That’s too much.”

I wanted to say, "Yeah, that's why I'm awesome." But instead, I became an embarrassing puddle of tears, essentially validating everything he just said. I felt about twelve years old.

“I have such bad luck!” I wailed, sounding like a child crying it’s not fair (admittedly, not my best moment). All my hard work, all those gruelling early morning swim sessions, all those long rides on the trainer – for nothing? (You mean I could have been sleeping all that time?) I was devastated. But nothing I said could convince him otherwise. No race. That was his medical directive. I knew it was tough love – he truly has my best interests at heart – but that didn’t make me like it any better. I decided I would wait until the next week and get another doctor’s opinion. (Never mind that the sports medicine doctor had already told me not to race over a month ago. Never mind that at all.)

After he left, my favourite nurse came up to me and said: “Look, if you were the average post-BMT patient, we would not be discussing whether or not you could do this big race. We would be discussing graft-versus-host disease, prednisone side effects, kidney problems, lung damage, and a whole host of other major health issues. The fact that our discussion is about a triathlon at all is pretty awesome.”

In other words: get a grip. This is a minor setback. It was incredible that after all I’ve been through, I could even consider such a race in the first place.

But that’s just it. I’ve been running full-tilt from what happened to me. Most of the time, I don’t think of myself as a leukemia or BMT survivor. That's not a label I want. I never consider that I can’t do something just because I’ve had cancer. I’ve been training so hard and going after my goals as usual because in my mind, I am my old self. Cancer-schmancer. That never happened. Two years erased from my life. 

Moving on.

Good old rest.

Except that I’m not my old self.  I might never be. This is the reality of surviving cancer. 

They irradiated my brain and body with lethal doses. I had insane amounts of chemicals pumped into my veins. I have someone else’s immune system trying to live inside me. No one is normal after that. As much as I’d like to behave as though it’s all behind me, my body and mind are still recovering from what happened eighteen months ago. I do not handle stress as well. I am more emotional and less focused. I am still considered “high risk” for things like the flu, pneumonia, measles, and other infections. And any athlete can tell you that long endurance sessions suppress the immune system, which is probably not what I want to be doing right now.

So what do I do? Do I fold and just accept that I can’t be who I want to be, just yet? Or do I do what I always do and push on? Or… do I make a new plan, even though I know my plans almost never work?

I returned to the clinic last week, hoping that I’d see a different doctor with a different opinion. My doctor must have known that was my plan, because he made sure to see me himself. Despite the fact that I was almost entirely recovered, he maintained his stance:

“If you do that race, you will die, because I will kill you myself.” (That is a direct quote. I failed to remind him that this would surely violate his Hippocratic Oath.)

When I resolved to do less this year, I had no idea that would mean that I would suddenly be forced to do almost nothing. Of all the people in my family that got sick this Christmas, I was the only one who got pneumonia and was almost hospitalized.

Dreaming of warmer, lazier days.

But really, it’s not bad luck. Both the stress fracture and the pneumonia were direct results of not adequately resting a body that’s still in recovery (as much as I hate to admit it). Some people are couch potatoes. I am the opposite. I am really, really terrible at resting.

On the flip side, my entire medical team has told me repeatedly that the reason I am doing so well is because of all the exercise I do. Go figure.

So now I feel that I owe all of you an apology. I committed to something, I got everyone excited, you got behind me and sponsored me with your hard-earned money, and I am supremely grateful for that. And now I cannot do what I promised, or the doctor that saved my life might kill me.

But since there are too many people fighting blood cancer that need our help, and since there are too many people lying in hospital beds that can't run, and since Isaac Cote died before he had a chance to really live, and despite the fact that my plans never work... I have a new plan. I will not get myself killed (at least not on purpose), nor will I let you all down. Instead of my original goal, I have decided to race the Vancouver triathlon in early July, which will be only a few days after my two year BMT anniversary. It seems fitting that I will race in the hometown that I love, swimming in the ocean where I grew up, with all my family there to cheer me on. And then, in March 2015, I will finally get to race the Hawaii Lavaman. Of course I have no idea where I will be or what my health will be like a year from now. But I can’t fear the future forever.

My husband has been kind enough to point out that this is a much less insane goal. It will give me time to build some muscle and bone to prevent injuries, it will allow me to ride my bike outside (which, if you recall, I’ve only ridden once outside, ever), and it will also give me a chance to practice on aerobars, which I’ve never used. I will get to train in open water, and perhaps by race day I will actually be able to run. In retrospect, the race in March would have been a horribly crazy gong show. All in all, this is a much more logical plan. (But, seeing as I'm all about the crazy, I still like my first plan a bit better.)

So here I go. Slowly, carefully, recovering, reassessing, re-planning, reconfiguring, but not giving up. 

Never giving up.

Still with me?

Knockout

Snowboarding with my dad.
Abundantly blessed.

I think it’s safe to say that I am getting really good at rolling with the punches. Well, maybe not really good. But at least better. And perhaps this is good for me. I am not, as most of you know, a particularly laid back person. I go big, I like things on time, I like things as planned, and I like things done well. And I really hate waiting.

I've also never thought that I had particularly bad luck. In fact, in 2011 when my daughter was born, I thought I was an unfairly blessed person who had never endured any real hardship.  I still think that I’m unfairly blessed in the grand scheme of things, but I think I can cross hardship off the list. (I’m pretty sure leukemia counts.)

But the hits just keep on coming. And the last one that landed was the flu. Wait, scratch that. The very last one that landed was pneumonia. Smack. Pow.

Cousins! Sharing pink eye! And the flu!

Our flu saga began with my two year old daughter (Patient Zero), who coughed so hard at our family Christmas party on December 22 that she threw up. That was our first clue that Christmas 2013 was going to be epic. The next day, my son was coughing too, and we heard that our niece and nephew, with whom we had played a few days before, were also unwell. On Christmas day, my sister-in-law was violently ill and my daughter was a miserable, feverish mess. On Boxing Day, my sister got a sore throat while snowboarding, and my brother-in-law was incapacitated on the couch. On December 27 another sister-in-law was ill, her kids still not better, and on December 28 my mother-in-law ended up in the ER (she’s OK). On December 29 we had pizza instead of turkey with my in-laws because no one felt well enough to cook, and that night I ended up at the ER with my daughter because she took a turn for the worse (she’s OK too). On December 30 my nephew got pink eye. On January 1, my husband started vomiting and I started coughing. And on January 3, when my daughter and husband finally started to feel better, I came down with a raging fever. On January 4, we did our family photo shoot while my sister and I had feverish chills, and my niece was now the one with pink eye (those pictures are going to be awesome, by the way). By the time we flew out of Vancouver on January 7, I was seriously ill, my dad was in bed with the flu, my other sister-in-law was sick, and my mom had pink eye too. No word of a lie.

And then we arrived at Pearson Airport.

Most of you in North America know about the travel chaos that erupted on January 6 and 7 due to extreme weather conditions and hundreds upon hundreds of flight cancellations. We flew out of Vancouver knowing that Toronto was in iced chaos, but we figured that since they were flying us out there rather than keeping us in BC, then things must be easing up.

Well. You can all guess how that turned out.

They flew us into Toronto knowing full-well that it was chaos. Shortly after our plane landed, Pearson halted all incoming Canadian flights, meaning we were just hours short of being able to stay in Vancouver another day. We were definitely grateful not to be stuck on the tarmac with two hungry kids for hours, as many others were, but our connection to Ottawa was cancelled before we even landed.

My little super traveller.

So my husband bravely stepped into the daunting WestJet lineup to re-book our flight, while I took two extra-strength cold and flu tablets and tried to entertain the kids. For hours. It was really fun. Two thumbs way up.

There’s a thing about insanely busy airports full of irate people. You don’t want to have the flu there, and no one wants you to have the flu there. Despite my into-the-elbow coughing and obsessive hand washing, I could almost watch the pandemic unfolding as people walked past me and then onto their planes (I’m sorry).

We couldn't get a flight home that day, so we were given a hotel voucher and sent off to the Marriott for the night (presumably so I could infect more of Toronto).  Not too shabby, except that we didn't have our luggage.

Oh well, I thought, the kids can just swim in the hotel pool in their undies. Until I realized that they are too young to swim alone, and, well…let’s just say neither parent was up for that particular public spectacle.

But no big deal – our flight left at nine the next morning. Not much time to kill, right? The kids could binge watch two hours of TV, go to bed, get up, and fly home. Easy peasy.

Due to my cough, I called my transplant nurse to cancel my pulmonary function test scheduled for the next day. She asked me to come in for a chest x-ray, as she suspected I had pneumonia. That possibility had never crossed my mind, despite having pneumonia last winter (most of the time, I tend to believe that I'm less sick than I actually am). I mentioned that I had heard something on the news that high-risk patients who had the flu should immediately start on Tamiflu, but I didn't think that applied to me anymore.

Dead to the world at 9am.
Why can't this happen every Saturday?

“Am I still considered high risk?” I asked her.

“Yes!”

Oh. I hadn't even planned to tell them that I had the flu, except to cancel that test. Oops. She then informed me that if I couldn't get out of Toronto the next day, I would have to go to a hospital there. (See what I mean about rolling with the punches? You start to get really good with practice.)

Since we were still on Pacific time, it felt like the middle of the night when our alarm went off. We groggily checked our email to find our flight cancelled. Again. We were now scheduled to leave at 5:30pm instead of 9:00am. Another day in the Polar Vortex of Toronto with no bags, hats, mitts, or bathing suits. We rolled right on over and went back to sleep. Late checkout please.

Hunting for our bags at Pearson.

In the end, we did find our bags, and our flight did eventually leave, but not before I splurged on snacks with our $10 a person food vouchers. Fruit, almonds and cheese for everyone! (Yes, we live large.) I went to the hospital the next day, where I was diagnosed with pneumonia and pleural effusions, immediately put on IV antibiotics, and told that I would need to be admitted. I had no idea how sick I was. But after much begging, they finally allowed me to go home, where I am slowly recovering. (Though I am thinking about becoming the official mascot for antibiotics. Maybe I could score some free medicine.)

So what is the moral of this awesome story?

When Patient Zero is a coughing, vomiting, snot-wiping, saliva-spreading two-year-old, don’t bother running. She got you already.

And always, always pack bathing suits in your carry-on.

A Year of Less

2011 was the year of PhD insanity and the birth of my daughter. 2012 was the year of cancer, and that’s pretty much it. 2013 was the year of healing, recovery and reinvention (and repeated injuries).

So what is 2014 going to be? After much thought and many different lists of goals, I’ve decided to make this the year of less (I know, super inspiring). What I have learned through these past few months is that triathlon is a metaphor for my life: as long as you are trying to do three (or more) things fairly well, you cannot do any of those things exceptionally well. When you only do each sport twice a week, it is essentially impossible to get very good at any single one of them. I find triathlon awesome in that I never get bored (different workouts each day), but also frustrating in that I will never get very good at each individual sport.

Since I got cancer and stopped working on my PhD, this has basically been my life. Before that, I was laser focused on my graduate studies, so I excelled. I was an expert at what I did, at the expense of most other things. Now, being unable to pinpoint one particular thing that I want to do, I am floundering a bit. I am an expert only at changing my mind.

Snowboarding bliss

I watch my son, who loves everything and wants to do it all, but cannot sit still for one particular thing. He comes by it honestly, as I am like that too - I love it all. Life is awesome. After a year of being so sick and unable to do anything, I spun around with great enthusiasm and tried to do everything. There are so many great things to do, how does one choose? (As a side note, I really do not understand how anyone is ever bored - I could fill a book with all the things I want to do and try). But the problem with this is that everything suffers (including my family), because I am trying to do too much.

When people ask me what I’ve been up to, I find myself a little dizzied by my own response. “Well, I started a business, I’m training for a triathlon, I’m doing my yoga teacher training, and I’m also trying to write a book.” Wait… am I not also a mom – AKA the chef, maid, laundress, chauffeur, educator and primary caregiver in the family? And don’t I have also a husband somewhere in there? I’m fairly certain that no one has extended the twenty-four hour day just yet.

So. For the good of all mankind, but mostly for my family, 2014 has to be the year of paring down. Instead of setting more goals and more resolutions, I’m actually working really hard to do less. I’m the queen of super lofty goals – not setting them is tough (case in point: committing to a first-ever triathlon with a stress fracture, no bike, and $6400 to raise). No one has ever called me lazy. So now I need to set the bar lower on my ambitions (I just gagged on that sentence. Just a little bit). 

Here are my resolutions for 2014: Have more fun. Drink more water. Do more yoga. Eat more greens.

Hot chocolate dates with my daughter
rank pretty high on my 2014 to-do list.

I’d like to stop the list right there, and that’s a struggle. There are so many other things I want to do. I want to write a book and earn a decent living, move my family to Vancouver and break twenty minutes (again) in a five kilometre race. Publish some articles in magazines. Organize my house. Volunteer at the cancer centre. It goes on and on. And because I always feel a little nervous that I have less time than the average person, I get anxious when I think of putting anything off until next year. What if I don’t have a next year? 

As if to drive this point home, I just found out that a young friend of a teen I know died on December 30. He was diagnosed only a few months before I was (January 2012) with the same leukemia that I had. This hits a little too close to home and my heart breaks for the family. Cancer is not a gift - it is a serial killer.

Many of us have a lot less time than we think.

And then my daughter tugs at my leg. She doesn’t need anything in particular. She just wants me to hold her. At that moment, am I so busy trying to accomplish things that I am annoyed with her, or can I stop and give her a good, long hug?

I spent an hour with her yesterday quietly putting sticker dresses onto paper dolls. Was that productive by our busy society's standards? Of course not. But it was bliss.

Do you think she cares if I break twenty minutes in a 5k or publish a magazine article? Nope. But she does care if I’m happier, if I have more time for her, and if I’m less stressed and irritable.

Whenever it is my turn to leave this world, I want my children to remember a happy mom. A mom that did yoga with them in the living room. A mom who laughed and goofed around and wasn’t stressed out all the time. A mom who had energy to chase them around the playground and take them to the pool and teach them how to read.

I don’t want them to remember a mom who was overextended, irritated and exhausted.

Dance party? Yes please.

I want more time, in every sense. And the only way for me to get that is to do less. This is a resolution I have never set before. Being busy is my bad habit to break.

So for the rest of this year, if you ask me to do something or attend something and I say no, please don’t be offended. It’s a word I don’t use very often, and I’m going to be practicing it. Every time something looks interesting or a new opportunity comes across my path, I’m going to try really hard to just say no.

Unless of course someone offers me a pony. Or a house in Vancouver. Then obviously the answer is yes.

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The name of the young man that I mentioned above is Isaac Cote. It would mean a lot to his family and friends if you would be willing to make a donation to the Leukemia & Lymphoma Society in his name. He was a young, healthy teenager who was diagnosed out of the blue, just like I was, and he fought hard but didn't make it. That could have been me. This should not happen and we can find a cure. You can help by donating HERE.