Sunday, March 18, 2018

Waiting

You know that feeling when you’re waiting for something? You know it’s coming, but you don’t know when.

Multiply that by a billion and you’ve got something approaching the response to a terminal illness diagnosis. The doctors may give you a prognosis, but it’s vague, and could be way off.

Unless you’re actually in your deathbed … and why is it always a bed? Why not a death chair? Or sitting at a death table? What happens if you’re in the bathroom, on the death toilet, when that final moment comes?

Can you manage it so you die in a dignified manner? You don’t want to be discovered on the bathroom floor with your pants half down. Someone should make a device that pulls up your pants if you fall off the seat. Is that so much to ask?

Or maybe it’s not that sudden. Maybe you get a chance to pull your pants up when the grim reaper approaches. You should be able to sign up for text message alerts. Of course then you’ll start getting tons of casket ads in your Facebook feed.

And what about that final Tweet or Facebook post? That’s kind of like what last words used to be. People attach some great significance to last words, as though a dying person suddenly understands and can sum up the secrets of the universe in 280 characters or less.

“Moving 2 the light its beautiful had breakfast burrito today”

And there’s the whole nagging uncertainty about when to start something. Unless you’re a great writer or composer or mathematician, you don’t want to leave some unfinished work lying around. I mean, Mozart left a requiem for someone else to finish, and Dickens left The Mystery of Edwin Drood unsolved. Mathematicians spent over 300 years trying to prove Fermat’s Last Theorem because he left a note in the margin that said “There’s a nifty proof of this.” Whole new branches of mathematics were invented in trying to come up with the proof (which someone finally did.)

But it doesn’t seem likely that anyone will spend that kind of time on an unfinished blog post.

Anyway, that’s the kind of crap I think about while waiting.

Friday, March 16, 2018

Saturday, March 3, 2018

Am I Weird?

As a victim of advanced prostate cancer, I see a lot of doctors. For about a year and a quarter, my care was overseen by a very highly regarded oncologist at the Dana-Farber Cancer Institute. Late in 2017, however, she apparently concluded that there was little or nothing more they could do for me. She said I could expect to live another three months or less … six if I was lucky … and she recommended I sign up for hospice care.

Now I’m sure hospice is extremely beneficial and comforting to many, many terminally ill patients and their loved ones. However, the concept of hospice is that you are in the final stages of illness, and essentially give up on the idea of treatment. From that point, you can expect interventions only to relieve pain and discomfort.

There is no way I was ready for that!

I’m still quite independent. I shower and dress myself, get my own food when necessary, and maintain a limited but fulfilling lifestyle. I go for walks. I host friends and family (though my wife is stuck with most of the work.) Writing for this blog actually gives me a sense of purpose. And then, of course, there’s the all important watching of TV. Somehow, I can not see myself just sitting at home waiting for the grim reaper (especially not if he or she comes during “Jeopardy.”)

But this seems to be what most oncologists expect.

Most of the doctors I’ve spoken with since seem to regard the “3 to 6 months” as a prescription rather than a prognosis. (“Kick two buckets and don’t call us in the morning.”)

It’s a mystery to them why I would waste their time and resources (drugs, blood for transfusions, etc.) when I’m clearly just biding my time. Several doctors have told me how much respect they have for my Dana-Farber oncologist, implying that I’m somehow defying her expertise by trying to live like … well, like a living person.

Fortunately, over the course of a number of doctor’s appointments and hospital stays, I have encountered a very few doctors who get it. These select few seem to understand that, despite my bleak prognosis, I’m trying to conduct my life like a life … to pursue any avenue that might delay the cancer’s progression, and to stay as comfortable and even energetic as possible while doing it. These are the doctors I want on my team.