Penmachine

My wife Air is wiser than me—more self-aware, better at thinking long term. A big reason I'm not that way is because, until I developed cancer at the beginning of last year, I'd never had to face big, difficult decisions. I had a happy, stable childhood, did well in school, lucked into good jobs, and found her. (More accurately, she found me. See what I mean?)

Even after my cancer diagnosis, I've followed the path I've usually chosen in life. That is, I've coasted, and let gravity take me where it will. My treatment decisions have been easy ones. Follow doctors' orders. Get tests, have surgery, take chemotherapy and radiation, more tests, more surgery, more chemo, more chemicals, more treatments, coming up on two years' worth now.

On hold

The surgeries in my intestines were successful, but small nodules of cancer spread to my lungs anyway, and the chemical medicines for those haven't worked so well. The metastases continue to grow slowly, regardless of what my doctors have thrown at them.

My latest surgery a couple of weeks ago was my first that wasn't about attacking the cancer. It was simply to make my life better, to reconnect my intestines so that I'm no longer walking around with an ileostomy bag of poop glued to my belly. Now I have another new, healing scar, and I'm re-learning how to use the bathroom the way I used to.

That surgery prompted my wife to have a talk with me a couple of days ago. With her wisdom, and her insight, she's seen what I've been doing in my mind for the past couple of years. I've been treating my cancer as something to fight with everything the doctors and nurses can offer, no matter how sick they make me, hoping that one of those weapons will kill it so I can move on with my life. I've put my life on hold—and my family's life too, hers and our daughters'—to fight the disease, treating it as a phase to get through before I return to something normal.

Experiment, not treatment

Except that's not how it's going. The next treatment the B.C. Cancer Agency is offering me is a Phase I clinical trial of chemotherapy agents. That means it's a very early human test of the drugs involved, not even designed to find out whether the drugs work to fight cancer, but rather how patients like me respond to them—what levels they appear at in my bloodstream, how they interact, what side effects they produce. In other words, we've run out of the conventional therapies, and we're moving on to experimental ones that have a very small chance of working. They are, however, likely to produce side effects, even if they aren't effective in shrinking my cancer.

Air made me ask myself—after almost two years on hold, most of which I've spent hammered down by those side effects, or recovering from surgery—how I want to live my life with cancer. Because that's what it looks like I'll have to do. We don't know how long that will be: months certainly, years quite possibly. All indications are that, like my diabetes, I'll have cancer for the rest of my life. It will probably be what kills me, whenever that is.

Yet since I stopped my last chemo treatments in September, I've felt good, verging on healthy, better than I have in ages. Therefore, much of what I've suffered through, especially recently, has been from the treatments, not from the disease. I thought that suffering was a necessary part of the fight. So I thought. But now it's time to make some real decisions.

Real decisions

Do I want to be part of this new Phase I trial, to contribute semi-altruistically to cancer research, spending many days at the Cancer Agency getting tests, taking pills every day, maybe feeling sick all the time and getting more strange skin rashes, perhaps even developing other weird side effects like elevated blood pressure, maybe for no reason that might actually get me better?

Or do I want to look at something else, like Vancouver's Inspire Health Integrated Cancer Care, and the Callanish Retreats, to try different things and look at managing cancer instead of fighting it? Strange as it sounds, should I make cancer part of how I live my life, rather than something that stops me from living it?

When I heard about the trial yesterday, I assumed, almost unconsciously, that I'd proceed with it. But that's still coasting, just taking whatever the doctors serve up from a diminishing buffet. There are places I still want to go in my life, things I want to do, the husband and father I still want to be. Perhaps now is the time to go there, to do them, to be that, because I can't wait forever first.

I shouldn't waste my life trying win a fight that likely can't be won. I should take it off hold, and live it.

Labels: cancer, chemotherapy, death, family, ileostomy, inspirehealth, love, science, surgery, travel