Ignoring the Sword of Damocles

Dad wrote a post a little more than a year ago asking "Is This What it is Like to be on Death Row?"  He posited that "in a way, my situation is similar to that of somebody on death row. Merkel cell cancer is the executioner. Dr Nghiem  is my defense attorney. He is appealing my sentence to higher courts."  It was an apt analogy then, and intervening events have unfortunately brought another level of accuracy to the analogy.  A year ago (even a few months ago), dad could forget he was on death row for long stretches of time.  He could play with his grandchildren, dine and go on cruises with his wife, play bridge, and work. By contrast, a death row inmate may forget from time to time that he is on death row, but he remains imprisoned, unable to enjoy even a moment of normal life.  The physical impact of the cancer is now making it harder to enjoy normal life.

My dad isn't a lawyer, so I doubt the distinction was intended, but when he wrote about death row, he said that he is "appealing my sentence to higher courts."  Until now, we were hoping his conviction would be overturned, eliminating any accompanying sentence.  I'd still love to see a full cure, but at this point we're through most or all of the appeal and a lengthy stay of the sentence pending appeal would be a welcome outcome on its own.  The battle isn't over yet, but the most promising appeals of the conviction are behind us.  I'm sure every death row inmate listens until the last second for the phone to ring with a pardon from the governor or a stay from the Supreme Court, and sometimes it does.

Hope remains, but as it diminishes we cross into another problem and another legal analogy:  The chilling effect.  At some point, the death row inmate in my dad's example may stop studying for the GED, stop learning new skills, and toward the end may even refuse to start a book so lengthy he might not finish it before his scheduled execution date.

While we wait, hoping for a stay from the Supreme Court of medical progress and treatment outcomes, dad battles daily with the question of how to spend the time he knows he has, regardless of treatment outcomes.  Unlike the death row inmate, dad is home from the hospital, released from the confines of the death chamber's anteroom.  He is free for now, but some of the trappings of his sentence remain -- a PEG feeding tube, weakness, and pain.  All of the trappings can, for now, be managed (the pain with Vicodin, the weakness with physical therapy).  The knowledge of his situation, however, is not quite so simple to manage.

Thurgood Marshall wrote in a dissenting Supreme Court opinion "That this Court will ultimately vindicate [somebody] ... is of little consequence - for the value of a sword of Damocles is that it hangs - not that it drops."

Our challenge is to find moments we can ignore the Sword of Damocles. The Sword of Damocles is a sword, suspended by a single hair, hanging above a ruler's throne, casting such a pall that the ruler soon begs to cede the throne (see footnote 1 below for a more detailed description).

Cicero says of the Sword of Damocles, "Does not Dionysius seem to have made it sufficiently clear that there can be nothing happy for the person over whom some fear always looms?"

In the days following dad's diagnosis, we understood Merkel Cell Carcinoma to be so deadly and aggressive that it seemed a Sword of Damocles, destruction a hair's breadth away.  I struggled to accept that there was nothing to be done, but that was not in my nature.  I found the MCC Google Group.  George, and soon others in the group, reached out.  Dr. Nghiem got involved.  We soon realized that the sword may be hanging, but by something far more robust than a hair.  Indeed, it was by no means certain that the sword could not be removed.  Nearly two years later, the rope holding the sword may be fraying, but dad and the family have enjoyed birthdays, vacations, and good times even in the shadow of the threat.

Unfortunately, the chilling effect of the threat is settling in.  I can't imagine what passes through dad's mind, but I know pain keeps him awake many nights.  I doubt even he knows whether it is physical pain or emotional pain that is behind the insomnia.  He does not feel up to having visitors, updating this blog, or engaging in anything that requires extended concentration.  His cognition seems fine, but the weight of his circumstances surely makes concentration a hard task.

My oldest daughter, Eva, has visited him a few times.  He spent a few minutes with 4 year old Sara yesterday.  Sara said "I wish you could feel better."

The question is whether dad can feel better.  Physically, it seems on balance that he does feel better.  There is new pain on the left side under the lung (pleural pain), but it is somewhat less than the now-discontinued posterior mediastinal pain was.  Dad is still using a walker for infrequent walks, but he is now sitting in a chair regularly, which wasn't happening last week.  Dad is engaging in discussions more frequently, but he is becoming short of breath more quickly than before.  His voice has been raspy and almost godfather-like since his stent replacement surgery.  Dad is refusing most food and water by mouth, but he getting nutrition via a PEG tube.

Physical improvement aside, the sword still hangs, and the chill it casts has become quite strong.  Other than those who die young and suddenly, the Sword of Damocles will one day hang over each of us.  That dad has enjoyed nearly every day since his diagnosis is a testament to his strength.  That he is having trouble enjoying the early days of his release from the hospital is not surprising.

He is scheduled to see Dr. Flam again on Friday, March 23.  They will likely schedule a PET scan at that point.  Dad saw no point in doing a PET scan earlier -- if it was good news and the chemo worked, he wouldn't be strong enough for another round yet anyhow.  If it was bad news, learning it earlier wouldn't be helpful either.  The esophageal biopsy that was done in conjunction with the removal of the original stent showed dead and dying tumor cells, so there is some objective evidence that the chemo worked.  The closure of the esophagus after removal of the first stent and the new pain are of concern to dad.  So we live with a couple of weeks of uncertainty.  There is some thought that the left pleural pain may be pneumonia-related, so there may be some intervening diagnostic tests.

I wish there was some positive note I could conclude on, but it eludes me.  It was three weeks ago yesterday that my dad went to the ICU, and so it has been three weeks since the reality of what is going on has solidified.  If dad gets to feeling well enough to have some normal days, I'm sure he will take advantage of them.  The appeals aren't yet exhausted either, and nobody refuses a pardon.

Footnotes:
1. From Wikipedia's description of the Sword of Damocles:  The Damocles of the anecdote was an obsequious courtier in the court of Dionysius II of Syracuse, a fourth century BC tyrant of Syracuse, Italy. Pandering to his king, Damocles exclaimed that, as a great man of power and authority surrounded by magnificence, Dionysius was truly extremely fortunate. Dionysius then offered to switch places with Damocles, so that Damocles could taste that very fortune first hand. Damocles quickly and eagerly accepted the King's proposal. Damocles sat down in the king's throne surrounded by every luxury, but Dionysius arranged that a huge sword should hang above the throne, held at the pommel only by a single hair of a horse's tail. Damocles finally begged the tyrant that he be allowed to depart, because he no longer wanted to be so fortunate.  Dionysius had successfully conveyed a sense of the constant fear in which the great man lives. Cicero uses this story as the last in a series of contrasting examples for reaching the conclusion he had been moving towards in this fifth Disputation, in which the theme is that virtue is sufficient for living a happy life.