Updated: Oct 28
Part Two in the Death of Picante Saga
Last night, on my way upstairs to write this post, I stopped by her urn tucked away in the dining room under the bare, transom-like window. It's sandwiched on the built-in between a growing pile of bank statements and medical correspondence and a cardboard box containing the cremated remains of our last pug, Cooper. Just shy of seventeen, our meanest little guy died only four weeks before Kara went out the front door on a stretcher in the throes of what would be diagnosed as sepsis.
As if I needed further proof of what the last thirty-two days had shown me, I rested my hand on the appropriately flashy vase and felt the cold metal inlay encircling the lid. For four-and-a-half years, Kara had persevered through stage 4 colorectal cancer and its intimate tribulations, yet I had never imagined that the back wall of our dining room would someday become her columbarium. Clenching my jaw (as I tend to do now), I looked at the depiction of bursting nebulae on the body of the urn and bowed my head... as if I, and not the lacquered vessel beneath my fingers, should bear the weight of ash it contained.
Because I had failed Kara in my duties.
At the beginning of the year, a CT scan indicated that her cancer was "less stable." As the winter dragged on, she began to suffer from nightly fevers, bulging butt abscesses, heightened rectal pain, and the stress of trying to get into new clinical trials. During this same period, she did part-time work with poor eyesight attributed to hyperbaric oxygen therapy (an uncommon side effect), while waiting for cataract surgeries that would not be available for several months. While on the wound front, her butt wounds turned from two healthy pinholes purposely left open for abscess drainage to a growing concatenation of oddly puckered mounds covered in stringy yellow tumor tissue--all in the span of three months.
As if these challenges were not enough, she spiraled into anxiety and depression after a disappointing holiday season. Her days became a tedious program of couch-bound distractions haunted by rectal pain and crippling exhaustion. Because sitting upright hurt like it did in the bad old time of pre-miracle drug treatment, she gave fewer hours to creative projects like practicing her bass guitar or building her celestially themed stained-glass mosaic. She also started turning down visits with friends. Still--even after a massive bleeding incident through her wounds--she navigated what she once called "the betweentimes" with her usual focus on getting better through body work, home remedies, and spiritual attention. In late March, she even started a second clinical trial feeling hopeful about a stable outcome. Or if not that, then at least a less unstable one.
As her oncologist expected, the experimental drug promptly went to work on her rectal tumor, though perhaps not surprisingly at a heavy price. In the first half of April, Kara struggled with retching, acute nausea, and copious outpourings of abscess fluids and dead tumor through her wounds and natural orifices. Which gave strong support for the drug's effectiveness... but then came the severe swelling in her neck and shoulders. (I'll take "Bad Moon Rising" for a hundred, Alex.) The dangerous allergic reaction capped off a month that saw Kara suffer from grisly wound discharge, anemia, breathing difficulties, convulsive coughing, stoma herniation, cataract surgery, and stress over filing our hopelessly Byzantine income taxes--the algebra test from hell that shows what our government really thinks about the virtues of self-employment.
To intensify matters, Kara kept butting heads with an irresponsible, yet dogged surgical billing specialist (like the paperboy in Better Off Dead, "I want my four-hundred dollars!") and belligerent health insurance gatekeepers who refused to cover her specialized ostomy supplies despite the billing codes she kept trying to give them. The denials led to a humiliating incident during one of her trial appointments, when she tried to produce a urine sample in the restroom. When she pulled her pants down, she found her herniated lower abdomen had caused her pouch to pop off, so that her exposed intestine poured fecal matter all over her thighs. Without her phone to summon help, she saw no choice but to wake up the whole cancer tower by pulling the alarm bell. And though the nurses cleaned her up promptly and compassionately, she couldn't help but feel triggered by feelings of childhood shame as she sat on the toilet, sobbing.
Yet despite these afflictions and abuses of power, Kara continued to focus on feeling better. "Life always feels better in May for me," she wrote ("Welcome to the 'Shit Show,'" April 27). "Please let this be no different." And for a day or two, May seemed like it might answer her prayer. Her aunts resumed work on a backyard project she wanted them to finish, her ostomy nurse hooked her up with better gear, and her oncologist got her into a new clinical trial. The immunotherapy looked promising for treating cancers like Kara's that develop what's known as "high tumor mutation burden," or the number of mutations found in the DNA of cancer cells. There would be a "washout period" of three weeks, and then she would jump into the new treatment, eager to contribute to science, though hopefully also to her own future.
On May 9, one day after she blogged that she was "coming out of the depths," she ran a 102-degree fever and checked into the ER.
It is at this point that I truly began to fail Kara in my duties.
(I'll take "Accountability" for TWO hundred, Alex.)
Granted, wearing the caregiver's crown is not a simple matter. Especially when the Queen takes a dire cancer prognosis and shreds an air guitar with flying high kicks right out of the gate. Since her earliest days of cancer treatment, I had watched Kara bounce back from so many bloodbaths that I almost expected her to start feeling better after just one or two dances with the new infusion. As far as I was concerned, this latest trip to the ER was nothing more than a hitch in the washout period and an opportunity to shoot some B roll for the video I was making to celebrate our upcoming four-year cancerversary. Given the Queen was still throwing devil's horns signs for our customary ER photo opp, I figured we were still on track for the next adventure.
Never mind the medical horrors and bureaucratic bullshit (that's you, health insurance minions) that had been grinding her down since the beginning of the new year, we were going to get her cancer at least a little more stable while our oncologist scanned the horizon for the Ultimate Cure, "per the usual," as Kara would say. My head full of plots, it didn't occur to me that I might want to reevaluate my fairly limited role of chauffeur and wound care nurse as I stood by my wife's bedside in the dark, waiting for steroids to help break her fever.
The caregiver's role may not be a simple matter, but still... looking back, I didn't seem to believe I needed to adjust my crown at all.
To be fair, no one told me what to watch out for as events took a turn for the worse in the days and weeks ahead. But neither did I think to ask as the next adventure edged us toward Room 5R 05, an alphanumeric string that could hang me if I let it.
Next: How to bring six men with a stretcher to your door.
--Charles Austin Muir
Photo courtesy of Juuso Haarala (modified for this post by the author)