It was the best of times, it was the worst of times...
Dickens could have been writing about Jenny’s last weekend. Saturday June 21st stands out as one of the best of times – given the limits that her disease has imposed on Jenny’s activities. Now that Jenny is off Cytoxan (an anti-cancer drug that was used to suppress her immune system, on the theory that Jenny’s own body is attacking the nerves that send signals to her muscles), mingling with the public indoors is not the life-threatening risk that it was just a few weeks ago. So, on this best of days, Jenny went with her family to see Get Smart at a local movie theater, and followed that treat with a wheelchair “walk” at the marina to watch the kites flying high in the stiff breeze.
Unfortunately, Sunday June 22nd was another of the worst of times. Jenny couldn’t seem to clear her throat all day, and had to be taken by ambulance to the hospital, where doctors discovered that she was suffering from a toxic buildup of lithium – a drug she has been taking because there is some experimental evidence it might be effective in treating ALS and other neurodegenerative diseases. (Several doctors believe that Jenny has a variant of ALS (aka Lou Gehrig’s disease) that only affects the lower motor neurons.) The lithium toxicity is abating, but Jenny is still in the hospital, with a nasal-gastric tube to supply much-needed nutrients and fluids. She hopes to return home tomorrow.
Jenny’s future holds too many Sundays and not enough Saturdays. Her best chance to halt the rapid downward progression of her disease is to find one or more elusive “comparables” near her age (and probably female) who have experienced symptoms similar to Jenny’s. The hope is that their medical history, added to Jenny’s, may provide the insight necessary to identify a treatment that could extend her life and, if that’s still possible, point the way toward at least partial recovery of the physical vitality that she possessed as recently as a year ago.