B is dying.
She is laying in a hospital bed in our living room, hurtling down the path toward end of life. They call it death with dignity. Tomorrow she will drink a toxic cocktail that will end her months of suffering, attended by a nurse, her friend T from the East Coast, and me, her partner of 23 years.
Three months ago, she was a vital, intelligent 72-year-old retiree enjoying life to the max. She painted, took photographs, worked out at the gym, cooked elaborate meals, visited museums, walked her beloved botanical gardens, gardened, played with the cats, read voraciously, watched police procedurals on BritBox, communicated with friends, traveled the state and hung out with me.
Now, she is sad beyond words after being tortured by the gods, abetted by the medical establishment and America’s indifference to providing proper health care.
Her first inkling that something was amiss came at a meal, when it seemed like she had joined me and many of our friends who experience some acid reflux from time to time. Over the course of the next month, that turned into an inability to keep food down, complicated by swallowing issues. After a week of sleeping sitting up while coughing and gagging, we went to the emergency room at a local hospital.
They admitted her as a patient, ran some tests and told her she had stage 4 cancer of the esophagus. The doctor assigned to be her oncologist and guide through the labyrinth of treatment dropped by her room in the evening to pay a “courtesy call” and briefly discuss her liver cancer. He was surprised to hear there was a huge growth in her esophagus and was quite unprepared to discuss it.
He told us the prognosis was death in nine months if left untreated. He recommended immunotherapy, but said if it worked she would be well for awhile. Then it would come back and they would do more treatment. That would work until it came back. And eventually it would kill her.
He would discuss the matter further with us when he returned from a weeklong vacation he was about to embark upon. The more elaborate diagnosis was a rare melanoma that had metastasized to her esophagus, liver, bones and lymph nodes.
All fighting between us stopped. So did meals together. Though we generally got along, we hadn’t been this nice to each other since our first year together. I quit my 55-year-old pot habit.
I have had what seems like three near-death experiences in the last few months. Head goes fuzzy, blood pressure crashes, feel like I’m slipping away. First two were when I was high and active. Last one was during an Arroyo walk. Hot, humid, but I was straight. I need to stay healthy for B. And then not die before the 5-year-old cat. I can do this. B is not my world, but she validates it. I don’t know who I will be without her.
One month later, B began immunotherapy and her health immediately went to hell. She developed a nasty head-to-toe rash that quickly morphed into hideous giant blisters from her hips to her feet. It was eventually diagnosed as bullous pemphigoid, though the biopsy didn’t pin that down.
The doctor said he had never witnessed a reaction like that.
B couldn’t swallow, was nauseous and unable to take nutrition or drink. The doctor recommended home care for intravenous treatment, but the nurse couldn’t find a vein and it was back to the ER. They hydrated her and she felt better. B insisted on having hydration treatments at the hospital daily and the oncologist agreed. Her legs swelled to elephantiasis proportions and she lost her mobility.
The doctor prescribed a diuretic to drain the fluid even as B continued hydrotherapy. As the rash turned to blisters, the nurses who juiced B daily became horrified at the lack of care. They gave us a bag of bandages and ointments, which I dutifully tried to use during the long nights and messy days as B’s mind clouded over, exacerbated by heavy doses of prednisone and an ever-changing array of drugs.
She was sleeping three or four hours a night.
She fell twice in our home and was so heavy with bloat that I had to call paramedics, once to lift her back in her chair, the other time to transport her to the hospital. They warned me I couldn’t keep calling them like that.
Our oncologist was associated with a world-famous cancer hospital, known for coordinating vast resources to aid patients. He would lead a team of professionals, organized by a case worker and augmented by a clinical social worker. That didn’t happen. A hydration nurse slipped me the card of a hospital social worker and said call her. No one could tell me, a 75-year-old with a bad back, how I could get the 24-hour home care B desperately needed though we had the resources to pay for it.
I was her home care for two grueling weeks, dragging her out of bed and off her big puffy chair in the living room to the walker for transport to the bathroom and beyond. It was a 24-7 job. B couldn’t sleep, so neither could I. Care giver, shopper, household manager and cat wrangler. I shlepped her to numerous doctor appointments, monitored her desperate communications with friends and medical folks, and tried to coordinate her care.
She did not go gently into that good night. She wailed and railed and was indiscriminate about where she aimed her pain. I was the easiest target and too often acted badly in response. A reversion to the mean. I failed her.
Assistance came in contradictory dribs and drabs, including partial home care. But I continued to do the major lifting. Each hospital stay engendered new drug regimens, new personnel, new medical equipment and supplies, and new false hope that now we had a handle on how to provide B comfort and relief. Palliative care, scheduled to begin in the first month of her diagnosis, was put off by the hospital for two months to accommodate her treatment. Bad idea.
Mired in a morass of suffering, we never explored alternative treatments and our oncologist volunteered no suggestions.
All the while B, a longtime financial supporter of a right-to-die organization, was edging down that road. As the burden grew, the resolve to end things strengthened. Then solidified. We talked of a dual path of exploring treatment possibilities and end-of-life, but B had made up her mind.
She signed papers to enter hospice, ended treatment and hunkered down for what we expected would be a compassionate conclusion to the long ordeal. A chance to regroup and properly mourn together as the end neared.
Again, the arrival of a new bewildering array of drugs and supplies and assistance failed to relieve the stress. Chaos continued to reign. Within a week, we set a date for death and hoped for the best.
Death with dignity strongly reminds me of the compassionate care we gave one of our cats when her end was near. After having put more than a few cats down over the years, we took the advice of an advocate for letting Lily die naturally, Cats are not like dogs, he said. They don’t painfully fight to the bitter end. They just curl up in a corner and meekly expire when the time comes. If something goes wrong, he is available to end it the conventional way.
That time came on a Saturday, when he was not available. Two excruciating days of cat whimpering and then howling before the end. Afterward, I put her in my lap and cried for an hour before sticking her in a giant plastic bag for conveyance to the municipal animal shelter for disposal.
B’s body will be picked up by the Neptune Society and cremated. I will receive a container of her ashes and cry til I die. Life is hard. Aging is harder. Dying is the hardest.
