Pictured above: The night crew
Warning: The following is based on personal experience and is not intended as medical advice.
Cancer journey co-pilot's log star date 9.21.23. The mission is over. Rushing in to fill its space is a choking, mushrooming cloud of forms. Death is one aspect of reality, bureaucracy is another. Both are inevitable and hard on the living. And this is what I would like to address in tonight's ship's log: That which is hard.
Over the last twelve weeks, my co-pilot fought brutally hard to recover from sepsis while resuming immunotherapy only seven days after her hospital discharge. But as the weeks wore on, she lost more and more autonomy only to learn the treatments were not working and the oncologist had nothing more to offer her. Even then, alarmingly swollen, catheterized, leaking diuretics through her wounds, and barely able to breathe at times, she still wanted to keep trying "to get better."
So she hit her daily 64 ounces of water intake from her monster thermos, chugged coconut water for electrolytes, and clumped around with a 2000-ml urine container in her hand or hooked to a walker when she used one. Her ostomy pouch was always popping off because her abdomen was so full of fluids. More than once I would see her ambulate like this, with her oversized shirt hiked up and her intestine hanging out in all its bulbous, beefy red glory because we had run out of ostomy pouches, thanks to a broken healthcare system.
If this sounds like a messy disaster waiting to happen...it was. And it did happen. Far too often.
My co-pilot was an absolute savage. If tearing her lip to pieces from anxiety and healing it again with aloe vera was the only mission she could accomplish in a given day, she did it. Even after she lost the use of her legs, she always wanted to try to get better... to feel better... to be better. And, given her disease progression, this made this phase of our journey together fucking HARD.
Kara did not want hospice. To hell with that. For almost five years, every time she yawned or even looked tired, some medical expert would tell her, "Go to hospice." No wonder, given her elemental, rebellious, self-made nature, she aimed for small goals of improvement all the way to the end. Getting better, feeling better, being better, it became all the same to the hive mind of support that developed in the sick bay of our living room in the final weeks. This mind consisted of a core group of nurturers who saw that their stubborn, fiery captain's wishes for healing were continually honored.
The nights then, became surreal parties of both bonding and what felt like bullying on both sides of the hospital bed--which Kara nicknamed "Irene." Each of us would take turns being the Bad Guy with the Pills, negotiating with our captain for one more sip of coconut water with a probiotic, one more spoonful of apple sauce with crushed potassium tablets, one more shot of iron supplement laced with even more potassium, drawn into the Shakespearean storm of her bedtime confusion even though she regularly agreed that this was how she wanted us to nurse her.
I make it all sound bad. But every night included massage (which made her purr) and ended in affection and promises of another party. Every night we saw just how feisty, self-determined, and loving our captain could be under circumstances that conventional wisdom would see as undignified and unnecessarily painful. The problem with this view is that it seeks to expedite the human experience of advanced disease with an efficient formula of pain management and symptom treatment, including the symptom of anxiety over one's imminent death. "Stop fighting what's coming...just be comfortable."
Side note: Let it be known that Irene is also military code for "Moving out" in the movie Black Hawk Down. If you know the story, the mission does not go easily. Kara wanted to move out by her own means, on her own schedule, with her own people, in a way that did not make the transition easy. And the thing is... why does the process have to focus on comfort and expediency? Why not ignore the consensus, dig deep, and try to get better, if that is how the patient wants their story to be written toward the end? Because ultimately, Kara did get better. Moments before she passed, she stuck her head forward with a smile on her face. And I got better, too: I learned more about helping another human being in twelve weeks than I have in a lifetime.
The weekend before she died, I cautiously enrolled my co-pilot in the hospice program. But it turned out that we didn't need hospice, not at all. We didn't need the drugs because Kara danced with pain in a way that is hard to describe. "Denying it," "pushing through it," and "being tough," don't capture her relationship to how pain moved through her body. That's another story, though. We didn't need the hands-on nursing, either. I've rolled, tucked, stuffed, padded, flushed, swapped, drained, taped and swabbed some of the leakiest, mashed-up situations a body can develop and changed out the bed sheets all while the patient is mumbling in her sleep...with no one around. Day after day. Hospice? It's a good program, sure. But forget it. We were Kara's hospice.
Only hospice doesn't quite describe what we did, with our DIY hybrid of life-saving and life-soothing measures that we invented on the fly with Kara, the Queen of Spicy, in charge of us all the way.
We were not hospice. We were HOTSPICE.
I am proud of what we did. We made Irene everything Kara had wanted it to be. Badass. Precarious. Hilarious. Tumultuous. Strange. And full of love. Picante all the way to the end. And yeah, fucking hard, too.
But, as Tom Hanks says about baseball in A League of Their Own: "The hard is what makes it great."
My co-pilot was the greatest thing that ever happened to me.
Until next time.
--Charles Austin Muir