This is one of several essays from my private cancer journal. It is not intended as anything than a record of my states of mind as I struggled with the disease and the effects of the treatment.
Monday, December 27, 1999
I get my prognosis tomorrow. I already know it is serious but until I went through the books on prostate cancer today at the bookstore, I didn't know how serious. Or should I say, why.
As I wrote Stacy, I had good news and bad. The good was that I probably won't be put on chemo and radiation, which I dreaded. The bad news is that it is very advanced. So the chances are that I will be told how bad it is and that they are going to fight it with CHT (complete hormone treatment) which I am already on.
There are still too many factors. I might have months to live or years. It will probably depend on how I respond to the CHT. I did see in the books that it is common to get an adverse reaction (more pain etc) when CHT is started, but I didn't. My reaction was positive. The pain began to lessen. Then again, the pain was so bad, I don't know how it could have done anything but improve.
I can't forget how bad the pain was. There were times when I couldn't walk. I was lucky to hobble to the bathroom or to get some food. I couldn't cross my legs or reach down to put on socks. Sitting itself was painful. So was lying down. Driving for a few hours or walking for 30 minutes meant I was going to be down for a couple of days in serious pain.
That is what I was experiencing for a year. I had every symptom of PCa, including lower back pain, that I excused as arthritis. I don't want to go through it again. As bad as the pain is the inability to move. It is so degrading to put one's undershorts on the floor, sliding one foot in and then between the agony of bending over and moving it with the other foot, one manages to get the feet in and then bring the underpants up the legs. Standing is its own effort. The legs won't support the body so one has to push up with the hands. Each movement is pain and to even lie still, there is no relief.
I read in some books today that CHT usually produces a surge in the pain for a few days or maybe a week, before lessening. I had the opposite reaction. Within 24 hours, it was backing off. Maybe that is a good sign. I'll learn more tomorrow.
I also learned why the doctors told me that my PSA count of 1000+ was the highest they had seen. They said below 4 was average but they didn't say what "high" was. According to the books I saw today, 8 is high. I saw charts with PSA counts, symptoms and treatments and there wasn't anything over 20, if that. And I'm over 1000.
I did find one guy who had a PSA of 2400 but his PC was in the B range, which meant the cancer hadn't left the prostate, if I recall right. Mine is stage M, the most severe, metastasized into the bones and probably into the lymph glands. That's why chemo and radiation aren't an option.
I also learned that death by PC is among the worst. It is extremely painful and debilitating and pretty much inevitable. I don't look forward to that.
About the best thing I read was a doctor from a Johns Hopkins Hospital cancer program who said there is no excuse for cancer pain. Suffering means the doctor didn't prescribe the right drug or not enough. If all else fails, there is morphine which, like lesser pain killers, continues to work as the dosage is increased. That will be my choice, if I let it get to that point.
For now, I am pain-free. I can walk, cross my legs and even climb stairs without having to pull a leg up to the next step while holding to the banister. That is what I was doing before. I was even able to fly to Tampa, go through a depo for two days and not be in excruciating pain the next two or three days. It was bad but not as bad as it might have been. It gives me hope that I can get to California to see my son before I die.
I have to decide what else I'd like to do. My life has not been one to fight for. It has been miserable and painful for about 18 months. Even before the diagnosis, I was in too much pain to be able to sit and work, let alone stand, walk or travel. I was folding up. My life was folding up. It was as if the cancer said, okay, we might as well have a medical reason for no more future.
But being on the cusp of death can provide insight. I've seen this too in the literature. While being thrown into the pits and bowels of life, one can also stand on a mountain top and see things with more clarity than was ever possible. It is such an irony, that so much insight would be granted with so little time left. But then, maybe there is a reason. Maybe that is what we have a chance to do before we return to that stream of Life from which we came.
Sadly, few people take advantage of this blessing-in-disguise. They are destroyed by their impending death or caught up in savoring the last few moments. No, it takes a "closing" to give form, even to a life. Until then, it is merely journey, a constantly changing landscape of experience as one wanders and prowls and seeks in this scavenger hunt called Life.
I need to write that up.