What A Difference A Day Makes
After months of being on the phone to my regional healthcare system, I finally was able to get a Urologist assigned, and make an appointment. Without a biopsy or any imaging, the Urologist quickly went to “I think this is cancer, 95% chance.” We had a difficult discussion and concluded with the need for a biopsy. An order went in, the biopsy was scheduled, and I waited. Three days before the biopsy in May 2024, I went to my online portal to check the biopsy time. It was not there. The biopsy had been cancelled and not rescheduled. Another moment on the “roller coaster” where you sit in silence, in shock, trying to figure out what happened. Even more important, you have to get back up and find the next step.
Once again dear friends, the journey becomes a roller coaster.
I don’t like roller coasters.
“I only have to get back up one more time than I am knocked down by the cancer or the treatments. Or the system.”
That’s the thought I had one night and it is one of the things that helped me get through the roughest parts of the roller coaster ride. Instead of going back to the same healthcare system that had repeatedly failed me on this and on previous health issues, I decided to make a few phone calls. On one of the calls I was given the name of an independent healthcare agent in my county. Normally in the US, we can only switch healthcare systems around December during “open enrollment.” But I called and talked with the agent anyway. What a difference this call made, which you will see if you continue reading about my journey…
The agent explained she provided a professional service to help match people with the health insurance that best fit what they were looking for.
(Let me stop and say that I have MediCare health insurance, the government program I paid into over the life of my career.)
The agent was an expert in MediCare and the insurance companies that delivered the benefits to patients. We talked about what I wanted, including being able to move from the regional healthcare system to the University of California at San Diego. UCSD combines research, integration of research into healthcare, and teaching new medical professionals and has hospitals, clinics, urgent care and numerous specialty facilities.
With the answers I gave, the agent went off to narrow down insurance companies with the best three programs. She called back in a matter of hours and we went over the programs. One clearly seemed the best to me, and it was a company I knew about. I can talk more about that if you are interested, send me a message.
Where this made a life changing, or perhaps more accurately a life-saving moment was the timing. The agent knew of a way to switch my insurance so on June 1, 2024 I would be at UCSD, no need to wait five months for Open Enrollment, After months of the cancer running in me with no diagnosis at the smaller system, I was now in the California state-wide university hospital system. Within a few days I had new insurance cards and on June 1st I was able to call and start getting appointments lined up.
One more side note that may be useful… At one point at the smaller regional system I was so desperate to get help that I called UCSD and said I would pay out of pocket since my insurance would not transfer to them. I had two appointments and was told how serious the painful red area was, and by this time even the slightest pressure caused bleeding from inside. So on June 1st I was going to get help quickly and nothing would stop me.
With urgency, UCSD made an oncology appointment, and that department made an urology surgery appointment for me, on the same day! I made more progress in a few weeks at UCSD than I had in months with the smaller hospitals — administratively rigid & procedural.
Now the roller coaster goes into high gear. Information immediately comes at me from a 2” fire hose. There is little or no time to process everything I was being told. Months of delays turned into days of rapid change, with no guidance, no counseling, just strap on the parachute and jump.
June, 2025, when the Oncologist & Urologist say you have maybe 6 months to live…. (2026, I am still here!)
In a future update I will talk about a major failure in my medical care, the lack of counseling. My medical team went after my cancer, but all my efforts to get some counseling for the scariest events in my life…those efforts came up empty. I felt desperate to talk to even one other man that had faced the monster’s den that I was standing in front of…but there was no one. For now, hold that thought and I we will revisit this failure in patient care… I appreciate you being here and hope you will spread the word about Early Eyes Save Lives, help create the awareness this and all other cancers need. I’ll be back here very soon!