Friday, June 27, 2008
Confronting the "P" Word: More of the Long Version
As I finished my 16 days in hospital, getting out turned out to be almost as hard as getting in, not the least because big decisions needed to be made about the best way to prevent another obstruction.
They had me on the 3 times a day shot of a drug called Octreotide, prescribed by my oncologist. It worked like a charm. The problem is that the drug is so expensive, and when it is used outside the hospital setting, it can be prescribed only by a palliative care physician.
So all of a sudden, a whole new team of docs, nurses and social workers started showing up at my bedside.
Now, in one way I have been preparing for becoming an official palliative patient for 4 years. As soon as my disease recurred, we knew that all treatment really ceased being curative. the goal of all my chemo since 2004 has been to keep disease-free intervals as long as possible, and to manage what disease there is to keep it stable. In that sense, even very active and powerful drugs can be thought of palliative.
I've given a talk to second year med students about palliative as a continuum, not a death sentence, and I have always had a clear understanding of the number of chemo cocktails remaining to me, and the order in which options would disappear. So while my conversation with my oncologist about how quickly my disease was now progressing was hard, it wasn't like the territory was exactly new.
But that didn't make it easy. And the first major problem came in how the professionals decided to put the whole matter to me. In order to have access to the long-acting version of the drug I would need (worth $2,700 per shot), I had to be registered with the Blue Cross Palliative drug program. I continue to be grateful that such a resource is available, and politically more committed than ever to a public system that takes finances off the table.
What I hated was how one of the nurses came in and played "How big is the baby" with me.
I know it is hard for nurses on surgical units to talk honestly with patients who have cancer. It remains a big unspoken word, even though many of us patients are there because of cancer. so she breezed in to reassure me that I could be happy about what was going on.
"Look," she said, spreading her hands out a bit. "Your regular drug coverage is like an umbrella this big. It's good, but not big enough. Now you have an umbrella that's thiiiiiiiiis big. Isn't that neat? That's all this palliative stuff is about. You are covered thiiiiiiis big," spreading her arms wide. And she grinned professionally, certain that she had erased all bad thoughts from my head.
Is it neat to be told you are now this ill? No, it's not. Is it neat to think that you can celebrate because someone just got you a Costco drug card that your own dear doctor could not access even if he wanted? No, it isn't. Is it neat to be treated like a child who gets the signal not to cry because mommy just kissed it better? No, it isn't.
All of a sudden, new players arrive on the scene. They leave, they contradict one another, and hit in the gut, you have to try and put things together when every cell in your body is trying to absorb what has just happened. I tried not to retreat into a little animal ball of hurt and fear. I tried to muster short questions and short versions of what I thought I was understanding.
And I realized I couldn't get the p-word out of my mouth when I tried to tell my sister and my friends what was happening. I talked about having a home care team, about the bureaucratic necessity of getting paperwork done "through Edmonton". I even tried out my own not-stupid nursy version that we were just accessing the system.
What I couldn't do for a while was to say, this is a new stage for everything. Only two people used hard words with me--my partial obstruction was labelled a malignant obstruction by a doctor friend, and we talked calmly about it. And one other used the word "terminal" and how hard it was for him to make the transition from knowing me as being in active treatment to being in this new place.
The first palliative doc I saw said I didn't have to promise to die or anything. But now dying was on the table, and so was the question of how to live with this.
Hedging my bets on your behalf if you are learning this for the first time, the nurses say I am not dying. I don't feel like I'm dying. I actually do feel like I am recovering from an overdose of expensive dope, and that we are on track to getting bowels managed well. But I am a palliative patient, and there's no short version of that experience.
I hope you might want to hang out in the next little while as a I explore the longer one.