Please Talk about Me When I'm Gone

Q&A

(2013)

Question: What would you do differently?

Answer: Nothing.

True answer: Everything.

Truest answer: I don't know.

...

If the death of a loved one provides the ultimate answer it also prompts all sorts of questions.

The universal ones, for starters: When will I die? How will I die? Why do we die? The personal ones: What will I remember? What might I regret? And ultimately the question that could define the rest of your life: What would I do differently?

What would you do differently?

I've never asked my sister this question. She did everything she could, and in many ways she did more than any of us. She worked the Internet like it was a convention and introduced herself to every article she could find. She obsessively sought all the inside information she could uncover, even if so many short cuts to insight led to locked doors and dead-ends.

(Our mother had been left with the unyielding aftershock of sorrow. When her own mother died everything happened too quickly, without time to facilitate any sort of strategy. She and her six siblings hardly had time to react, much less regret what could have transpired; they never knew what hit them. The cancer that took their mother was like an anonymous assassin: before anyone could look for faces or fingerprints the crime scene was already in the past tense.)

What could we have done differently?

We knew what we were up against, yet still had no idea how little we knew. "If this were ten years ago I would send you on your way," the surgeon said after the first operation, in '97. "But knowing what we know now, I'm recommending a round of chemotherapy. Let's blast your system so the cancer doesn't have a chance to come back."

We wouldn't worry about what we could have done (we thought). We did it.

The cancer came back, of course. A second, successful surgery in 2000 didn't give us false hope and couldn't lull us into a false sense of security. This time the surgeon advised radiation followed by chemotherapy, and we knew we were doing all we could do.

Do you think it's going to come back?

That was the question my sister asked me, in July 2001, just before my mother returned for her annual checkup. "No," I told her, truthfully. "She looks good, she feels healthy, we did everything we could do."

This is what I said to my sister, and to myself. They caught it before it spread-again-and then her system got the chemical scrub, again. What possible chance was there that it could find another foothold?

The cancer came back, of course. A third, not entirely successful surgery in 2001 left us no chance to kid ourselves. The prognosis was ugly but not impossible: she was still ready to fight and we would back her up as far down that road as we could go.

Do you think it will ever go away?

That's the question none of us ever asked. We knew it was in there and we knew it wasn't going anywhere. But it could be stalled, it could shrink, it could, hopefully, be managed. There were clinical trials to consider, reasons to think positive thoughts, and always the chance that a miracle might occur.

Here's the thing: what you don't know will hurt you, whether it involves cancer or used cars. Here's another thing: my sister learned more about cancer, symptoms, treatments, and clinical trials in a little over a year than most people could-or could want to-learn in a lifetime. One of my good friends is an oncologist, another has been a hospice nurse. We also lived in an era where the click of a mouse could uncover more detail than a thousand old medical journals. And still, looking back, it's disconcerting how little we knew, how little we still know, how much more we could learn, and how awful it would be if we were ever obliged to do so.

So: we can't change what we couldn't do, or know, or ask, or say. And we collectively recognize, and accept, that all the information in the world may have done next to nothing to change what happened to my mother. We knew enough, and were fortunate enough, to sign her up for some experimental treatments after that third surgery in 2001. The fact that they ultimately proved unsuccessful (too little, too late?) doesn't mean we shouldn't have explored those options; perhaps we could have explored other ones as well.

What could you have done differently?

This is the question we were never able to ask the assorted surgeons, doctors, and administrators. And what would they say, if we had? What could they say?

How much more time does she have?

This is the question we asked, as directly as possible, always leaving enough room-for the doctors, for ourselves-to avoid predictions that might be too true or come too soon. The surgeons told us, depending on the way you hear the words (especially in hindsight), as little as they could get away with, or as much as they dared, while steering us as far as possible from an answer we would figure out on our own, eventually.