Jonesing For The Journey
The Blog — Real Stories, Mile by Mile
Before radiation treatment could begin, I had to go through radiation mapping—also called CT simulation. I take you inside that appointment, explain what happened, what surprised me, why bladder and bowel preparation matter, and the five questions I believe every patient should ask before treatment starts.
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A cancer diagnosis can turn life into a fire hose of unfamiliar words, decisions, and questions. Jonesing for the Journey started as our story, but over time we realized it needed to become something more: a place where patients, spouses, caregivers, and families could find a place to begin.
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I thought my prostate problem had been fixed. My HoLEP procedure worked, the tissue removed showed no cancer, and my urinary symptoms improved. Eight years later, I was diagnosed with aggressive prostate cancer. The lesson wasn’t that HoLEP failed. It was that treating BPH didn’t mean I could stop paying attention to my prostate.
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Sue and I had already been sharing our cancer journey in real time. Then The Patient Story asked us to tell it again—from the beginning. Saying yes showed me something I hadn’t fully understood: sometimes you have to step outside your own story before you can see what it has become.
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I turned 60 on Monday. On Tuesday, I began two years of androgen deprivation therapy for prostate cancer. This Mile Marker is about more than lowering a lab number—it is about what it felt like to knowingly change my body, my energy, my intimacy, and potentially my sense of self in order to keep fighting.
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Every 90 days, one blood test has the potential to change the conversation about my prostate cancer. The draw takes minutes. The waiting can occupy your mind for weeks. This is what it feels like to live between the results—and why I am learning not to let the next PSA decide how I live today.
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Cancer happened in my body, but the journey happened to both of us. This is Sue’s view from the passenger seat—the injury she was already carrying, the sudden role reversal, the worry nobody saw, and the question caregivers are too rarely asked: What do you need?
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What the first weeks after radical prostatectomy really felt like — the catheter, leakage, exhaustion, small victories, and the things I wish someone had told me before surgery.
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After my prostate cancer diagnosis, I started looking backward. The HoLEP, the PSA history, the changing numbers, the assumptions that seemed reasonable at the time—none of them told the whole story alone. But together, they taught me why knowing your baseline and watching the trend can matter.
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People shared information, encouragement, resources, and hope with Sue and me when we needed them most. Paying Hope Forward is our way of making sure some of that help keeps moving—to the patient, caregiver, or family coming behind us.
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