Surprisingly, I had never seen 3 or 4 of the guys at the meeting—surprising because I've regularly attended the weekly potlucks, education/support meetings, and restaurant tours as well as waiting in the lobby for my treatments along with other patients. Although I haven't made the acquaintance of many of the guys I see at these meetings, I recognize them. But here were several guys I'd never even seen before. As I thought about it, it became less surprising. There are upwards of 100 prostate proton patients in the program. But on any given night, attendees at the Wednesday evening support meeting probably don't number more than 8o, including spouses. I'm guessing the normal potluck attendance is about 30 (plus spouses), and even fewer participate in the restaurant tours. Probably the strangers at today's meeting simply haven't participated in any of these functions. The proton treatments cure the cancer, but these "extra" meetings are where the healing takes place. Opting out of them seems to me to be turning down a huge part of the therapy available at Loma Linda. At one point in Jesus Christ Superstar, an exasperated, harried Jesus screams at the crowds who are demanding his attention, "Heal yourselves!" I know this moment has its basis in a story in the Gospels. I understand Jesus' frustration. How often do we pray for miracles but not take responsibility for our own healing?
At today's meeting, Lynette, the nurse in charge of follow-up, went over the schedules and procedures for our care after finishing treatment. She explained what we could expect to happen to our PSAs, which we'll monitor the rest of our lives. Then she detailed the kinds of side effects we might experience after treatment—blood in the stool, urinary problems, erectile dysfunction, fatigue, and blood in the urine. Most of these have a very low percentage of incidence for proton patients, are transitory, and are treatable by life-style adjustments ("Drink more water!") or, in worse cases, medications. The most common—blood in the stool—occurs as collateral rectal damage from the radiation heals itself and creates new blood vessels that, at first, are thin walled and may break under abrasion from constipation or rough foods like chips and corn. This too will take care of itself in time.
There was nothing about diapers, nothing about kissing our sex lives goodbye, nothing about colostomy bags, nothing about installing penile implants or artificial sphincters—all of which I've heard about from recipients of other therapies.
As I walked home after the meeting, I felt two emotions—relief and suspicion. Relief that I would be very unlikely to face the devastating side effects so common amongst men who have gone through radical prostatectomies or suffered by survivors of other forms of cancer. Suspicion because I wondered, Can it really be this easy? Is there something they're not telling us? Are the statistics phony? I have no real reason to believe any of the information we received was falsified. I think my suspicions are simply the flip side of my relief. I'll certainly be alert, ready to take action should any side effects show up. But for now, I'll rejoice in my relief.
Treatment count: 40 down, 5 to go.
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