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.
Life in the PSA Fast Lane
Or: Are we there yet?
Yesterday, I dragged myself out of bed at 7:30 AM when the alarm went off, a process
of awakening that ranks with medieval torture. I was not made for alarms and Caren
used to have one that nearly sent me packing. She finally replaced it with a
"Zen" alarm, an oxymoron if I've ever heard of one, but it turned out to be a joy. It starts with a single, lone chime (tuned to the harmony of the universe, if I
remember the promo, whatever that meant) and then offers another in (say) three minutes and then another in two minutes and so it goes. If I have to live with an alarm, it is the most civilized one I've found.
It still wasn't fun to get up. I had an 8:30 appointment with my oncologist and I would get the results of my PSA from the draw last week. Despite the ketoconazole, my PSA had climbed from 830 to 889 on 11/18 and then dropped slightly to 723 a week later so where would it be now? And why hadn't it dropped as it is supposed to do with keto?
Outside, there was a cold rain and a cold, gray sky. I couldn't ignore the drama of the weather and tried to imagine the appropriate musical soundtrack for my mood as I grabbed a cup of coffee from a BP station and headed for the hospital.
Once again, I am not enjoying this. The triple-digit PSA is of concern but worse is the growing weakness in my legs. My oncologist got me an appointment with physical therapy and last week I went in. I knew that I was hardly the type they have to work with in a VA hospital but regular exercise was painful and I wanted to see what they could recommend. After an interview with a therapist, I was put on a machine where I could sit reclined and exercise my legs. It was heaven. Getting the weight off the pelvis and having the chance to exercise my legs was what I needed so they signed me up for their "Wellness" program that allows me to go in and use the equipment for the next eight weeks. It made me feel like I was doing something about the condition.
But that was far behind me as I sat waiting for the news to decide if I stay on the ketoconazole or move on to the chemo. I wouldn't like the latter but I didn't have the dread of a few months ago.
He finally arrived.
"Down from 723 to 685," he told me.
I was silent for a moment, trying to comprehend it.
"Well, down is down," I said with a shrug. "What do you make of it?"
"I don't know," he said honestly.
He pulled up my PSA graph on the computer screen. It showed the soaring from 199 to 830 and then a slight rise to 889 and then the tapering off to 723 and 685.
"Better than going up," I offered weakly. He agreed.
"I'd like you to go back on the Zoladex," he said. "Maybe we can get a synergistic response. You've been off of it now..." He paused and looked it up. "...for six months now."
I was silent as I thought about it.
"Give it some thought," he said. "You're due for a Zometa infusion next week and if you want, we can do the Zoladex then."
I nodded. I had been ready for a dramatic PSA rise or drop but not a paltry fall of 38 points.
"Okay," I said.
He asked how I was doing otherwise and I told him about the growing weakness in the legs and the visit to PT and how the scheduled pelvic MRI never occurred. We chatted briefly as pulled something up on the computer and clicked a few keys and assured me that the MRI would be done. After another 15 minutes of talking, I left.
What the hell does a drop from 723 to 685 mean? And why isn't the keto biting as it has with other men that I've met on the lists?
I went back out to the cold and wet gray day and headed home, repeating to myself that down was down and better than up.
A half hour later, I put the question to the advanced PCa list. Then I slowly sagged out, realizing that the anticipation had been wearing on me for a week.
The next day, some suggestions came in response to my query. Why did he take you off the Zoladex, a couple of them asked, referring me to some material as to how the testosterone can rise under keto without an LHRH drug like Zoladex. I meekly tried to explain that it was my decision, realizing that it had probably been a dumb move. When I finished the replies, I called the VA and left a message that I would go ahead and get the Zoladex when I come in for my Zometa next week. It would be a ZZ Day, I thought to myself, trying to conjure up some humor.
And then in one of those synchronistic moments, I found an email from Don Cooley to his advanced list that recommended a Medscape presentation on bone mets and bisphosphonates (Zometa is a bisphosphonate) that, he said, also gave a good perspective on advanced PCa. So I went to it.
He was right. It was long (20 pages) but a good paper. But buried in it, around page 12, was a fascinating statement that really applied to my right-how situation:
The only thing that counts for these patients is how they feel. That's what we have to keep reminding them. It's not the PSA, because sometimes people come in and say, "I'll tell you how I feel after you tell me my PSA." And that's the reality. We basically encourage them to be obsessed with their PSA as long as they're still on therapy. Once they fail hormone therapy, I put PSA in the garbage. I care only how the patient feels, and that's what we have to reinforce in the patient. The patient shouldn't feel badly because he sees his PSA going up. Even though physically he's still okay, he's not taking advantage of life.
A number of us would take issue with disregarding it completely when it comes to juggling the treatment options, but, otherwise, the author was right. The rapid climb of my PSA and the prospect of chemo had been silently gnawing on me for months. Coupled with the legs problem, it had effected my outlook and my work. That was evidenced a few minutes later when I prowled my emails and found letters sent to me back in October (when the PSA shot to 830 and then the ear infection) that I had never answered. It was as if I had been mentally blitzed and, other than the joy of getting married, I had been stumbling around ever since.
The PSA is a very poor reflection of how severe the disease process is in this setting. As long as they're still responding to prostatectomy or radiotherapy, PSA is extremely important. It tells us if they're still responding to that therapy. But, once they've failed LH-RH, forget about PSA. They have to think of other things.
For the first couple of years, the agony was the blow of bad news and being up and down and thrown into one black hole after another. Now it is more subtle, gnawing at me when I don't even know it and effecting me in ways that I didn't expect.
Then again, what did I expect? The lack of those bouts of depression that drove me literally to the floor or into the night screaming were a relief and I have learned much since (and I'm sticking with my Everest metaphor) but it doesn't mean I am on top of this disease.
I definitely have some rethinking to do but I'll probably save it until the New Year. Like a lot of people, I am not at my best during the Christmas season. I need to get through it and into a New Year, starting with some Traditional American Football Bowl Games, especially since OSU* is undefeated and I now live in Ohio.
And I can't even drink beer.
Such is life in the PSA Fast Lane.
*Ohio State University
The cited Medscape article.