Notes from the Cafe Fiasco

Obama - 120 Days

You know, even though he's been President for four months now, I still am having a hard time believing it.

MLTD - Move Among the Mysteries

As usual Dana Jennings has much interesting to say about cancer: Click Here

MLTD - PSA Roulette - Prostate Symposium

And the quaternary number is:  4.9!

Bad News:  The number is up from 4.6 where is was three months ago.

Good News:  My "doubling time"  is 7.35 years.  This means that the cancer is still very slow growing.

I went to a Prostate Cancer Symposium on Saturday and heard Dr. Peter Carroll speak. He's someone who is very highly regarded in the field and also someone who is doing much of the most interesting studies on the strategic level of the disease (most researchers have their heads down in the genetic code).

What I got from the talk is that this is a time where researchers are just starting to get a handle on the disease and are moving toward methods of treatment that retain some level of quality of life that the current methods just don't do. This has been accomplished to some degree with breast cancer, but not with prostate cancer at this point.

I also got the sense that urologists are coming around to the idea that not all cancers have to be immediately treated (new studies show that for slow growing cancers such as mine, there is no difference in mortality for those of us that wait versus immediate treatment).

Still, I'm swimming upstream here. Only 6% of diagnosed patients opt for "Active Surveillance." Luckily, I have a urologic surgeon who is not knife happy and jokes with me about eating nuts and berries as a cure. He knows that I know that it's not a cure, but he also can't argue with the fact that the cancer hasn't gone much of anywhere over the past two years, so he doesn't bother.  At almost 59 years old, this is the first time in a long time that I've been too young for something.

Of course, I did get the reminder that the big knife is probably coming at some point. The question is when. It would be different if I was diagnosed at 65 when most guys get the news, but I'm too young to ignore it.

So, it's good that I went (even with the periodic terror that things like this engender which keeps me on my toes). I did find out something interesting:  Do you know what is the largest source of mortality for those of us with prostate cancer?  Heart attack. More men with prostate cancer die of cardiac problems than of any other cause. They keel over before the cancer can kill them.

Time to get back on the treadmill and lose some weight.

MLTD - 2 Years In

I wasn't really into getting poked and prodded and stuck this morning for some reason. I know that this process only happens once every three months, but I don't look forward to it. But then, I don't have any choice - I'm a cancer patient.

So we go off to see the urologist even when the juice to cope is low and we're not up to being one of the gazillion members of The Brotherhood That No One Wants To Be a Member Of that are stuffed in a small room at Brigham and Womens' Hospital. And we wait. And wait. Appointments times come and go so easily that you wonder if it wouldn't just be more efficient to do the "take a number" method.

That's until it's our turn to see the doctor and then things go very, very fast - he looks at the file, he tells you what he thinks of the last round of tests, he does an exam, and you're out the door and off to get your blood drawn. Lickity split. And in 48 hours you find out the magic number upon which the your future hangs. I assume that if the number is bad, then the doc gives you a call. If I'm not lucky, I'll find out.

You would think that after 2 years of this, it would be old hat. But, no, I haven't seemed to have lost the stomach churn or the feeling of being a rat caught in some sort of cross between a maze and a chess match. I don't like this, but I have no choice - I'm a cancer patient and the alternative is to step off of the medical map and into totally uncharted territory. I understand why people would do this. The medical system can breed such distrust that people will gamble with their lives to get away from it. It drives people to travel to clinics in Mexico, to order packets of unidentifiable herbals from the internet, or to adopt strange diets based on untested theories.

Why do people do this?  Because the current American health care is organized in such a way that it is increasingly difficult to come to the conclusion that the system gives a damn about the people that it is allegedly designed to serve. People spend billions of their own dollars in "complementary" therapies for no other reason that they want someone to work with them on their health that they trust and that they think actually give a damn about their health. This is not even addressed in standard medical settings except by those who really care about the people that they serve - and they're pretty much being eaten alive by their participation in the machine.

You hear a lot about how the American health care system is broken because it costs too much money and that is true, but you don't hear too much about the real problem - it has no heart anymore. Those of us who are at our weakest are being cared for by a giant machine that no longer has anyone at the controls - at least no one who cares about us. We've all become widgets in the "industry" of health care. That's great for MBA's but not for all of us - at least until the MBA's get sick.