Hard Choices

Had an interesting week, punctuated by an extended back and forth with Dr. Cima at the Mayo Clinic, my surgeon, through the Mayo Patient Portal. I had been unclear about some of the details of the upcoming operation, so I asked some hard questions.

The answers were unexpected and not what I wanted to hear. In brief: To eradicate the infection they are going to have to also eradicate the lowermost part of my digestive system, eliminating any hope of a future reconnection and restoration to normal.

The infection has been fought to a standstill by my immune system, but given the difficult terrain, so to speak, with lots of hiding places for pathogens, a complete victory is unlikely, no matter how much time passes. It’s the immunological equivalent of trench warfare. Long periods of relative calm broken by spasms of microbial violence.

Not willing to give up hope, I asked Cima how long I could reasonably postpone the operation. “Months to years” he said, provided certain conditions were met. This was good news, sort of, because you never know; maybe a miracle would occur and the infection would be vanquished once and for all, naturally. And maybe some clinic somewhere would come up with a new therapy for people with this particular condition.

Right. And any day now, hogs will sprout feathers and take to the skies.

Problem is, the thing could easily turn bad with almost no warning, and I’d be stuck because it takes 8 to 12 weeks to schedule this kind of operation, which requires multiple other specialists in addition to Doctor Cima. Once again I’d be in a life-threatening situation, at the mercy of local doctors of unknown quality, under emergency conditions. In other words, a recipe for disaster.

As if by design, I was reminded yesterday of this possibility by the sudden occurrence a major flareup, the worst in at least a year. We’re talking fever, chills, brain fog, pain and swelling, and other symptoms not suitable for polite discussion. As with previous times, the flareup passed, and today everything is normal. But next time it might not go so well. I’ve cheated death twice now. Three times if you count the terrible thing that happened to me when I was a child. Luck has a habit of running out.

There are only bad choices here. One more or less guarantees the elimination of an honest-to-god existential threat, but at a high cost. The other offers a (very) faint hope, but with an intolerably high degree of risk.

The good news is, if you are going to have this kind of operation, there is literally no better place to have it than the Mayo Clinic, and there is literally no better doctor to handle it than Doctor Robert Cima. Interestingly, “cima” is Spanish for “summit.”

In truth, I am extraordinarily lucky to have this opportunity. The Mayo took my case because it is a difficult one. I did not know this until recently.

In other news, I have filed paperwork to begin a legal action against the folks who put me in this bind. It breaks my heart to have to do this. I am not a litigious person. I have zero desire to hurt the careers of people who meant well, and whom I actually rather liked. But at the time I had said “just make make me whole again and all is forgiven.” And they didn’t. They made terrible, avoidable mistakes that cost me dearly, and whose aftermath will dog me for the rest of my life.

You just can’t let something like that that slide.

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