It should be no surprise, then, that prostate cancer patients tell their stories.
Whenever two or three of us are together, hardly any time passes before someone says, "So how did you hear about Loma Linda?" And the stories begin. That the stories are always almost the same matters not a bit. In fact, the sameness may be what we're looking for. If your story is like my story, the similarity helps validate my experience.
Here are the normal components of the story of a typical proton patient I'll call John.
- John's life went on in its normal way until, out of the blue, he was diagnosed with prostate cancer.
- His urologist said, "No problem. We'll just cut it out. I can schedule you for next week."
- John went home and began to do some research.
- His research turned up proton radiation at Loma Linda.
- He told his urologist about his discovery, and his previously caring physician now turned against him. Many are the variations on The Ugly Urologist theme.
- Along the way—maybe while he was doing his research—he encountered various others who helped him—former patients, his wife, friends of friends, mysterious strangers—the variety is amazing. The list of assistants almost always includes Bob Marckini's book, You Can Beat Prostate Cancer; last evening, it included Marckini himself.
- In spite of his urologist's ire, John contacted Loma Linda and was admitted to the program.
- John underwent treatment. During treatment, he encountered various minor or major problems, formed friendships, and had experiences similar to or different from other patients. He ran into people who enriched his experience—Rachel the Revolutions instructor, Stella the nutritionist, Dr. Carrot, Rev. Lynn "Make-Em-Laugh-Make-Em- Cry-Make-Em-Whole" Martell. John got caught running a red light by the camera at Anderson and Barton Road and paid a $450 fine. He made peace with The Balloon.
- By the end of his treatment, after he returned home, John realized that the experience had somehow changed him. Not only was his cancer gone, but he was a better, happier person. In LLUMC terms, he had been made whole.
- John lived happily ever after and found ways to pass on to others the good news about proton treatment at Loma Linda.
These stories often include one or more sub-stories about other prostate cancer victims or survivors. For instance, last evening at dinner, in the course of these stories, I heard about two prostatectomy veterans; one had his operation a year ago and the other five years ago, and both are still wearing diapers to cope with the resultant incontinence. The sub-stories invariably confirm the wisdom of selecting proton treatment over all other options. At support group this past Wednesday, the sub-stories focused on another proton treatment facility—Massachusetts General—and again, the narratives confirmed the wisdom of selecting Loma Linda.
Each of these story components has its variations from patient to patient. For instance, there may have been a family history of prostate cancer so that the diagnosis wasn't all that much of a surprise. The diagnosis always involves PSAs and biopsies, but the variety of PSAs, Gleason scores, and cancer stages has no limits. The treatment regimens themselves vary from patient to patient—20 or 45 treatments, with or without hormone therapy, with or without photon radiation, and so on. We patients listen eagerly for these variations, commenting on them, asking about them, comparing them with our own experiences.
But when it comes right down to it, the stories are all basically the same. They form and reaffirm and intensify and communicate the belief structures we share in this little community.
These stories are not just similar to each other. They are similar to stories that have been told by all peoples in all places ever since the human race developed the ability to talk. I'll deal with those similarities in a future entry.
Treatment count: 24 down, 21 to go.
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