I stopped posting regular columns in September when my wife of forty years, Betty, was diagnosed with stage four lung cancer. Her condition deteriorated rapidly despite the best treatment in the world at the highest rated cancer center in New England. She was hospitalized twice in Boston but never left the hospital the second time.
I spent her last five days sleeping on a cot at her bedside during which time her pain increased each day and her body systems broke down.
Her story is one of medical bad luck. Not only was her reaction to chemotherapy so bad she vowed to give it up unless the next round of chemo was with drugs that would not cause her debilitating nausea and fatigue.
That decision never had to be made because she developed an extremely rare side effect to one of the most commonly used cancer drugs, Gemzar. The first outward symptom of this drug induced disease, TTP, was that her finger tips turned blue.
By the time the diagnosis was made and the disease actually cured by a process by which all of the plasma in her blood is replaced in five daily sessions, irrevocable damage was done to her kidneys. Within a week she was on dialysis with a 20% chance her kidneys might recover on their own.
Her intention was not to opt for lifetime dialysis plus having terminal cancer being treat with drugs that made her feel life wasn’t worth living. She knew the odds that even with chemo living a year was unlikely.
She was told by doctors and nurses that one of the most peaceful ways to die was kidney failure. You just go to sleep and don’t wake up, they told her.
She decided to stop dialysis, in other words, she decided it was time to die as soon and as painlessly as possible.
That was not to be the case because it didn’t account for the fact that the tumors which spread to her liver kept growing, and the pain was off the charts. It barely controlled by ever increased dosages of Fentanyl which is stronger than morphine.
The hospital she was at has one of the oldest and best pain and palliative care programs in the country.
In spite of this when she needed a final dosage of medication to ultimately end her pain forever the nurses couldn’t find a usable vein since she’d had so many previous IVs.
There were two dialysis ports leading directly into large veins which I can only assume, since nobody will tell me, that legal hospital rules wouldn’t allow them to use to end someone’s life even though their pain was excruciating, that they were hours if not minutes from death anyway, and literally screaming out for them to end her suffering once and for all.
Betty’s arms were flailing about so much she had to be held down for a nurse eventually to find a vein and inject the final mediation. I hope they were able to give another drug, Versed, used as sedation for colonoscopies. When given with a morphine-like drug it is a quick and painless way to die.
I hope progressive hospitals assume a don’t ask and don’t tell policy on using such a medication combination.
After that she curled up on her side just as if she was going to sleep and in a few minutes took her last breath. She looked, at long last, utterly peaceful. In fact, to me she look as beautiful as I’ve ever seen her.
I try to keep that image in my mind instead of visions of her suffering the agony a cruel set of rules about end of life procedure caused her.