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?