There are words received via text that shatter your heart. Sent from a friend during their latest round of chemotherapy more than 5100 miles and multiple time zones away these are debilitating words. #notadamnthingIcando words. I respond to each line of text, being present without being physically there. In truth, it feels beyond inadequate. I want to jump on a plane and just sit next to him while he has these poisons dripped into his body via a port in his chest – and not only does he not want that, but I can’t. I scan hundreds of YouTube videos and send these as a possible lightening of spirit or at least distraction but he can’t watch them because the noise in the room where he sits with other cancer patients is loud. Very loud. A man sitting someplace behind my friend was evidently screaming from the pain of his infusion for hours. The time before last a woman was bitching non-stop, unnerving everyone around her and especially her family. (He survives this assault to the psyche earning platitudes from the son for his ability to crack jokes, and generally lighten the environment of suffering around him.)
The last time I was (physically) present to a chemotherapy session was more than sixteen years ago; the brother of my best friend, the uncle to her children, the husband of another dear friend and dad of three kids the youngest of whom was a toddler at the time, brother to another brother, uncle to his three kids, son, friend, et al. I haven’t been in the Beverly Hills Cancer Center (BHCC) to witness first-hand what I perceive as being the antithesis to luxury on which so much of Beverly Hills reputation rests but I was present at the Wilmot Cancer Center at Strong Memorial (Rochester, NY) and the contrast between the two care environments couldn’t be clearer to me. Sixteen years ago Mike was surrounded by family and friends, shifts of love floating in and out of the room like sunbeams streaming through clouds, there was raucous camaraderie (he being a former Major League Baseball player, the baseball coach of the local Jesuit high school, a widely and much-beloved friend) and I recall at least six people being in the (memory driven) seemingly private room besides myself and Mike. I could not tell you why I was there. As Jeffrey describes it BHCC is a ‘factory’, 12 reclining chairs crammed into a single visually sterile room with half walls separating patients, everything everyone says can be heard by every other person in the room, all the bitchingmoaningandcomplaining, the comings and goings of the staff and their commentary.
I didn’t think of this last night as I responded to the texts, but I had two vastly different dreams about those treatment rooms after I went to bed. And it strikes me that the experiences of these two men hang not simply on the distance of years and geography but also insurance coverage. Mike had robust private insurance and friends and family offsetting some of the costs, my friend Jeffrey was ‘covered’ by Molina Health as part of its participation in an Affordable Care Act Exchange.
The other component is two decades ago, regardless of the circumstances, we were as a nation and as individuals more compassionate toward one another. That compassion manifest in Rochester in an environment that was calmer and more conducive to healing. The perception of Beverly Hills Cancer Center I have gained through my texts and conversations with Jeffrey reflects an odd dichotomy, on occasion extraordinary but all too often disconnected from the very compassion which Hippocrates advocated and swore to uphold. His first oncologist failed to speak a single word to him in the first nine weeks after his diagnosis. His current oncologist, though certainly mending Jeffrey’s body and on a scale, infinitely more attentive, had the most outrageous response imaginable to Jeffrey expressing that he didn’t like the smell of his own burning flesh from the cauterizing knife used to install the port (replacing the defunct PICC line). My head is still reeling from the quote in the text I received on Thursday night. Compassion. Seriously. Lacking. (Say nothing rather than do harm.)
It pains my heart, my psyche and every aspect of my humanity that Jeffrey’s experience is a mere glimpse into a state of being under-insured in the United States. That “the haves”, those with robust private insurance, and the “have-nots” relying upon a broken system commandeered by shareholder value are somehow less human, less entitled to care and more inclined to be denied basic human dignity, less likely to be approved for the very treatments that they need to get healthy despite paying the disproportionate percentages of their wages to have insurance.
Let’s be clear, as of 1 September my friend Jeffrey is no longer insured by Molina Health, his Screen Actors Guild Blue Cross and Blue Shield coverage went live at 12:01 AM. I think about something one of his doctors said about Molina Health’s consistent position to deny coverage first and then if the patient gets loud about it, or the doctor treating chooses to advocate on behalf of the patient, then approve and eventually pay out. This seems like a path to protecting golden parachutes and seven figure salaries and double or triple digit earnings; to me, this seems more like a Ponzi scheme than health insurance. This strips the humanity from Molina Health’s employees and isn’t a terribly efficient manner of running a company given the human resource cycles of answering phones and ensuing paperwork.
Societies have always been measured by how they care for their most vulnerable citizens, it’s clear we are failing. The three hundred year expansion, supreme dominion, the subsequent decline of the Roman Empire and the resulting Dark Ages seem as though they could be minor in contrast to whom we are becoming. Maybe a tiny private room for receiving chemotherapy is insignificant in the grand scheme of things but the dignity such affords seems as important to healing illness as putting the ‘civil’ back in service.
This is the fourth instalment in my series on having cancer in America.