Friday, September 12, 2008

An Unwanted Journey: Day 1024 - Being Real

"Extra-hepatic carcinoma. Unresectable metastatic colorectal cancer. Palliative care. Extended survival. Quality of life."

Those are the terms and phrases with which I will become increasingly familiar in the next ten days. On 22-Sep-2008, I'll be doing more blood work and having a consultation with my medical oncologist to discuss palliative chemotherapy. We'll discuss in fine detail the risks and the side effects of the drugs I'm being offered and weigh those against the possible benefits. Between now and then I will have to design a model of how my end of life should look, not just how my treatment will work.

But for today, as I came to the realization of how difficult this will be, it was all just a little overwhelming. It all felt surreal. I don't think I had yet realized the shock of Wednesday's abortive surgery.

When a surgeon opens you up planning to do a liver resection only to discover that your abdominal cavity is full of metastases, the surgeon is vulnerable to surprise, not just you. My surgeon told me that situations like this only happen about 5% of the time because CT scans are usually sufficiently accurate diagnostic tools to ensure that what is expected is what you get. But here's the kicker - however shocked the surgeon was, I'm the one who has to live with the consequences.

After this kind of experience, even if you consider yourself optimistic and resilient, mortality stares you down. Yesterday with my rose-coloured glasses, I talked to hospital visitors about the worst case scenario being about 24 months survival. Today, it made more sense to say that 24 months survival is likely the best case scenario. That's not to say that optimism is stupid, that I am not hoping for another 10 years, or that I won't try to beat the odds. It just means that I what I now face are choices about balancing length of life with quality of life.

It also means I'll have to try to figure out where to draw the line between what's best for me and what's best for others.To be very blunt - and as one of my good friends said to me this evening - "to hell with heroism".

  • If I'm feeling good, then take advantage of that relative health and enjoy the moment.

  • Put together that bucket list and set some standards for happiness and simple pleasures.

  • Don't try to please everyone.

In fact, maybe now's the time to make an enemy or two - presumably someone who wants me to end my life doing things their way. I can't think of anyone who qualifies right now for my enemies list, but maybe that's the frame of mind to start cultivating.

But while I'm getting tough and being real, I have to admit I am one of the lucky guys who has a wonderful wife and two fabulous sons who are aware of the nature of my struggles. They will never add to my burden; they will help support it. They'll be right beside me agreeing with my friend who says, "to hell with heroism".

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