I don’t have 6 months?
Nothing, nothing, nothing could have prepared me to hear the diagnosis.
On the roller coaster you soon learn there is no low point, things find new lows while you do your best to hold on.
NOTE: I was not blogging in 2024 or 2025. I was keeping a personal medical journal which I am using to look back on the two year journey and share my experiences. Once I am caught up, I will switch over to blogging in real time (writing within a day or two of events in my medical life…).
June 7, 2024—By the 7th I had been with UCSD Health for one week. I received a call about a Cystoscopy (I learned to call them “cystos”) being set up and a urinalysis order was placed. A cysto is when a tiny camera at the end of a fiber optic cable are put inside your urethra. I don’t think my feelings and reaction were much different than what other men must have felt hearing this—some fear (of the unknown), expectation of a lot of pain, and the thought of a medical team watching me as someone pushed a camera inside me. I quickly understood how someone could decide not to go through penile cancer treatment…but I had to sail into this storm, so let’s move along….
June 16, 2024—I woke up in a cold sweat at 330am.
June 19, 2024—Another cold sweat at 5am, another night of poor sleep. I sat up and felt the acute lower left quadrant pain that I had been feeling over recent weeks. I had stopped putting my left hand on my hip because this pain was like a hundred bees stinging me in the same place. The penile pain that had continued to intensify was now joined by this new inguinal node pain in my lower left side. I could feel something swelling under the skin, much the same way as the penile pain had started. Enter the double dragon—acute, chronic, spreading pain combined with the emotional roller coaster. And the day before I had been at the smaller hospital system, to be with my partner as she recovered from her cancer surgery.
‘We do everything together, even cancer.’
A phone call from UCSD:
First Oncology appointment was set for Friday (two days away), at the old hospital. I was told any future procedures would be done at Campus Pointe (the newer hospital campus).
Cysto set for June 26th.
I was told to message my primary care doctor about stopping some meds the night before the cysto. Many months of advocating, and waiting suddenly turned into a downhill coaster run.
June 21, 2024—My first day in the “old hospital” at UCSD, my partner and I met with the Oncologist. There was very little said. I wondered if the doctor left his patient skills at home, or he was just more coldly scientific all the time. He told me how serious my condition was and that at this late stage the survival rate was not good. He said 50% of men would not make it to 5 years, and 50% of men would survive to five years (the 50 50 rule). My heart felt like someone ripped it out of me and threw it out of an airplane - free fall! A lot of that appointment is a blur, probably my brain’s way of self protection.
But this appointment was just the beginning. Later in the afternoon I was to see the Oncologist’s colleague, an Oncology/Urologist surgeon. I went into the first appointment with the goal of learning whatever procedure I needed and advocating for as little tissue loss as possible. I clung to my minimal gland/tissue loss as long as I could. I came out of the appointment devastated by what I heard, and how it was delivered to us in such a matter of fact way. I guess my insurance doesn’t cover empathy.
I headed back to the old hospital in the afternoon for a Urologist/Surgeon appointment. Not the type of double header I preferred, to use a baseball term. I was still in deep shock from the morning appointment. I didn’t think it could get worse. It did.
The Urologist explained where he thought things were. Again, I don’t remember much of it, because of one thing he said… We were in a small, dingy exam room (typical for the old 1950’s hospital) and the doctor said “if you do nothing you may get to the end of the year.” He was saying less than 6 months, if I did nothing. But why would he say that—do nothing? Had this doctor had a previous male cancer patient who chose to not have his penile cancer treated in hope of “this too shall pass?” Why was the doctor being as blunt as a baseball bat hitting me in the face? (baseball reference #2).
Of course I would pursue treatment. What felt like high voltage electric shocks in the morning appointment now quadrupled in this second appointment…I was no longer thinking about saving my body parts, rather I was thinking about saving myself.
I drove home in heavy traffic, feeling but not knowing what to feel. We had a family meeting, and the few words I was able to get out were drown with the tears that started to flow. Next up…waiting. For phone calls and scheduling and who knew what else—being scared in slow motion.