Lessons Learned
This entry follows my 2/7/26 entry which is my narrative brain (with some chemo brain mixed in) going back and re-experiencing the time up to the morning of my penile biopsy.
This entry is stepping back to see the lessons I learned as time went from painfully slow to Mach 1.0.
One of the goals I have is to bifurcate the way we look at penile and other cancers that impact our body’s most personal spaces. We can think about these diseases as medical and health issues, while we separate the cultural and other aspects that often slow us from finding understanding and awareness.
We need to work at removing stigma, inaction, disbelief and other human traits from the immediacy of what might be happening if the small difference you are finding is cancer. Cancer only needs a space in you; and time without treatment.
Here are some lessons I can share, as I look back on my lived experience.
Time changed shape on me. Minutes stretch, days compress, and waiting becomes something I felt in my body, not just in my brain.
My body got louder than my thoughts. Every sensation carries more weight when it doesn’t yet have a name.
Uncertainty is harder than pain. Pain can be endured; not knowing what it means is far more destabilizing.
I had less control than I expected. Appointments, results, and next steps move on someone else’s schedule. And I am not a morning person, like many doctors are.
Support matters—but it doesn’t erase meditation or a quiet space. You can be loved and still be alone with the question that matters most.
My idea of strength needed to change. Strength becomes less about toughness and more about staying present and adapting. And in my case, it became about collaborating artistically with my cancer. I came to realize this was a “marathon of hurdles” and not something that was going to “get a quick fix.” I will talk more about pacing myself in coming blog entries.
My imagination can and did work against me. When facts are missing, my mind fills the space, sometimes aggressively.
Identity is tied to the body more than I admitted to myself. Especially when the part(s) under threat are rarely talked about.
And my most personal body space quickly turned into something that rang in my ears almost every week—”do you mind if I take a look.” I will write at least a full blog entry on this topic. I stopped counting at 100—the number of people that needed to see my private space, before, during and after surgeries, and into chemo and survivorship. And yes, there were medical providers that “wanted” to see and to discuss what I was going through—part of the ‘very rare disease’ life I was cast into. This is where my mentoring skills began, at UCSD, a teaching hospital. More to say about paying it forward and backward—coming soon…
Relief and fear can exist at the same time. Feeling better doesn’t mean the danger has passed.
A biopsy isn’t reassurance. It’s the line between speculation and truth.
Humility becomes unavoidable. My body didn’t negotiate with me, and neither did time. I had no brakes. So I added my humor and perspective to the journey—actually I just made sure I didn’t lose these parts of me during the journey (or the roller coaster times).
Early attention matters. Small changes carry weight, and delays are not neutral. ‘Early eyes save lives.’ Please spread the word about awareness to everyone you know, it is about all types of cancer and diseases, early detection of small changes matter.
Here’s a link to my YouTube Penile Cancer Awareness animation that you can use to share the life-saving message about early detection and education: https://www.youtube.com/watch?v=hdPfz05mF6U