Work, exhaustion, movement. Work, exhaustion, movement. If someone asked about my life’s cycle, that would be it: ‘work, exhaustion, movement.’ It’s no epic mystery. And at the end of the day, most cancer patients probably believe few know their cycle or the actual intricacies of living day-to-day or existence. There’s no magic. There’s no spark. No one knows what it’s like to sit in some poorly designed cancer waiting room and have some clinician take away the last remnants of their life.
The finality of “You’re not curable ” barely etches across the membrane before another clinician offers some technical or operable alternative that might extend life. ‘You’re not curable’ gets washed away by the technical babble of tests, more clinicians, second opinions, and further indignities. And thus, the cycle begins.
All of us should understand what it’s like to stumble into the process. An often compassionless soul pronounces our death. And whether that death is near or far, we’re reminded of terminality via the spoken but unspoken. “Quality of life.” “Hopefully, this provides more time.” “Medication ABC will alleviate pain.” “We want to provide palliative radiation.” In those moments, the patient stands on life’s shore and watches their history and memories drift away like an unmoored boat. We can see life’s rippling wake, but unable to stop its drift.
The Buddhist (the Spiritual and most Christians) know that everything done, or not, makes a wake. However, for many in the death cycle, the boat only spins as we repetitively cling to redeeming trinkets of life. We seek to grasp the past, for the future, well, looks kind of bleak. The cycle of work, friends, family, holidays, parties, birthdays, marriages, divorces, retirements, etc., is destroyed by a newer wake: medical appointments, clinician consultations, medications, treatments, wills, trusts, last wishes, and finality.
As it stands no, my cycle is ‘work, exhaustion, and movement.’ I am tired. Some days, I can barely stand. Other days, my body is a wonder of movement. Slow dying is my norm. I am in the active care of clinicians, some who care, and some who consider me nothing more than a number. Yet, I see those who hope they’ll become the ‘one-in-a-million.’ You know, that one person who gets whatever magical treatment and lives another thirty years. Nope, they won’t.
My next series of appointments are with a pain management specialist, another MRI, a brain MRI, Echocardiogram, and Kappa Free Light Chain testing. And through each appointment, I stumble out unto the street and sunlight. I look up into the sky. Exhausted, I survived another day. I move and drive home. I sit knowing that my heart could quit at any moment or maybe it won’t quit today, but Multiple Myeloma kills me a month from now, or not. And thus, maybe medications will stave off the inevitable.
The medication cycle remains the same, with twelve medications spread between 6:00 AM, 1:00 PM, 7:00 PM, and 9:00 PM. Blood pressure checks will hopefully alert me before reaching hypertensive crisis. Or not. Glucose measurement testing follows and validates any blood sugar issues evolving as a side effect of cancer therapies.
In the background of my mind my employer’s mandates and mission statements are null and void. They’ve drifted out to the sea of life, voyaging to distant adventures I am no longer a part of. HR cycle’s through repetitive queries of what more management can do (and won’t) and supervisor statements urges me to do everything I can for myself. The cycle of friendly neutrality, with scripted apparent loving uncritical support but laced with, ‘let’s not discuss that you are dying.’ Here’s the Employee Assistance Program number, and call us in a couple of weeks.
I advocate for a good death, but I work in healthcare. Typically, healthcare does not believe in a good end. They want to fight. I want to die a good death. And instead of synergy, those two perspectives tirelessly compete. That’s not good news for the patient trying to make it through the day. Most of us on the road to dying have no experience. Outside of books by Elisabeth Kübler-Ross and others, there are no signposts or maps. We don’t want to do it, but we must learn to do it.
At the end of life, it’s about love. We must teach people how to love those leaving when every moral thought says, ‘Fight.’ Outside the condo from which I write, there’s no death. The death I know is in me. (Of course, the death your loved one knows is in them.) When you visit someone dying, you’re visiting as a life-filled individual. Don’t see that person with an attitude that reminds the dying of what they’re losing. Help them break any cycle and die an uncommon death: a good death.