The End Game, Stage Two: Dangerous Decisions

After seventeen days in Scripps Green Hospital in La Jolla, I'm home but I don't know for how long. I've advanced to the next stage of the End Game, about which I began writing a long time ago.

I don't have enough strength or skill at the moment to adequately explain the second stage of the end game, but, in brief, there comes a time when treating one life-critical problem makes it more difficult to treat another. Unfortunately, both are deadly and neither can be ignored. Preference in treatment can usually be given, but because every patient is different, the correct course of action is often unclear. Every choice carries life-threatening risks.

In my case, my seventeen days in the hospital was supposed to be limited to treating a cytomegalovirus (CMV) explosion. Most people have CMV, but it is dormant. Driving it back into dormancy is required in order to have the allogeneic transplant that could save my life. Some of the drugs involved in driving down the CMV can in themselves cause damaging complications.

Rather inconveniently, however, the cancer decided it was a good time to explode. Perhaps it was feeling neglected, not having been treated since the fifteenth of January. The drug I take to drive down the cancer, the only working one I have left, unfortunately also reduces the ability of the other drugs and what remains of my immune system to fight the CMV. Absent an obviously safe course of action, today I felt compelled to take 40mg of dexamethasone to preempt an autopsy that might read, "death by light chain coagulation." That is, a description of a death from blood so thick with light chains that it just simply can't do what it needs to do to sustain life. My next nightmare is that the high level of light chains in my blood will, when we start the transplant, trigger Tumor Lysis Syndrome.

I'm not entirely sure I should be going a single day without being "vitaled," as they say in hospital speak: measured for blood pressure, heart rate, oxygen saturation, pulmonary function, etc. On the other hand, I am not ready to spend another hour in hospital without enjoying some period of normal life. This is another example, I must point out to you, of the second stage of the End Game, where doing something necessary degrades the abilility to do another necessary thing. Yet quality of life matters, even when life itself is at stake — a sometimes counter-intuitive fact which one day I hope to be skilled enough to adequately explain.

The most exasperating aspect of this stage of the End Game is that whatever action is taken, unless it leads to the best possible outcome (e.g., a significant extension of quality life, cure, etc.), it is impossible to know if a different choice would have been better: the other choices could have made made the end shorter or harder to endure. There are no do-overs. In my case, even if the cancer can be held at bay while putting the CMV into dormancy, subsequently turning attention to driving down the cancer runs the risk of reawakening the virus.

I can't write more tonight, although there is much to tell you. I am weak from Cushing's Syndrome, 40mg of steroids bombarding my brain (which, after an un-premedicated dose of Cytogam, isn't working well to begin with), Yvonne giving me twice-daily infusions of ganciclovir, and my cat insisting that I play with her. I'm afraid my editing skills are absent as well, so until my mind is clear enough to fix it, good luck understanding my jibberish.