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.

1 comment:

Anonymous said...

Peter, Just an afterthought, I wonder if you have tried any estrogens for APC, I did early on and had great results, I remeber a guy who years ago been posted as no longer with us on the yana blog and he replied he was still alive years later doing low dose DES, DES requires antocoagulation to prevent clots, which may not be a problem with low platelets anyway. I did climera estrdiol patches 6 patches a week of .1mg each and it gave me lot of time. It alswo has the helps bones that may be osteopenic. Sartor was a fan. Something to discuss with an open minded MO.