This time, when I woke, an apricot glow streaked across the sky outside the screened hospital window as the sun pressed forward to bring another day. It did not feel like a new day to me. I’d been awake nearly the entire night while I sank to a new level of vulnerability.
As far back as I can recall, and even before that, I’d always been able to soldier on. I needed no one. Nothing could stop me. Nothing could break me. I was never an “all or nothing” person. I was an “all, all, all” person. I would conceive of what I wanted to accomplish, be, or feel and make it happen with panache. I could rise above any physical abuse inflicted, feel no pain, and shed no tears. I could move about with the grace of a ballerina even when my body was morbidly obese and later when Myeloma was poking holes in my bones. I could pull all-nighters week after week without a hint of sleep deprivation or any effect on cognitive function. I was formidable determination incarnate.
During that long night, I was reduced to complete and utter helplessness. It was as if my determination was a power outlet on the wall and my body had been unplugged. My GI tract, from my throat through my gut, was shredded from the treatment and roiled with infection. No amount of thinking or meditation would ease the pain. As a recovering alcoholic for 43 years, the idea of using pain medication gave me great pause. It's almost comical but true to say that I did not have the strength to writhe in agony. The only choice left for me was to press the button for the on-demand pump that delivered a dose of Dilaudid® whenever the pain became unbearable. I was so weak that I could not stand or take even one step. When I needed to use the commode, a nurse helped me swing my body to the seat that was placed right next to the bed. I had to come to terms with the act of having a stranger wipe my bottom for me because I was incapable of doing this for myself.
With each hour, the weakness became more profound until, when I pressed the nurse button, I lost control of my bowels as my nurse walked into the room. I had no choice but to lay there on my side as diarrhea continued to pour out of my backside while she assured me it was okay. I felt anything but okay. I was utterly without control over my body or its functions. This nurse, and many others in the coming days, compassionately washed my body each time it failed me and did all they could to keep me comfortable as we waited for the miracle to happen.
Despite the dawning light, darkness enveloped me and held me down like a brutal conquering creature with a massive paw pressed against my chest, hot steamy breath choking out my breath as the beast considered whether to tear me limb from limb. My adult body lay curled in a fetal position, and I sensed the child part of me shrunken deep inside my flesh and bones. It felt as if I was barely clinging to life. The feeling was pre-verbal, from a time long ago when I was frequently left alone and neglected for hours on end in a crib in a darkened room. My older sister told me I would cry for a time, but then there would be a deafening silence. Sometimes, she would sneak into the room and see me lying motionless with eyes open, fixed, looking nowhere.
Now, my eyes moved about the room, trying to connect with what was around me and make sense of what was happening to me. Illuminated by the soft glow of a solitary overhead light stood a metal pole, its apex with multiple branches holding a dozen bulging bags of medical infusions. These were all connected by a network of tubing extending from my chest across my clavicle and leading directly to my heart—a lifeline of antibiotics, antifungals, antivirals, a full spectrum of electrolytes, pain relievers, blood products, nutrition concoctions, and fluids. They sustained me, compensating for what my body could no longer do alone after the aggressive chemotherapy intended to eradicate the cancer by demolishing my bone marrow. The gowned, gloved, and masked medical team took regular blood samples to learn and provide what my body needed until my newly transplanted stem cells could take root in the purified and fallow marrow deep inside my bones.
My beautiful wife Jackie sat up on the cot where she’d slept by my side as she did each night. When she saw me awake, I could see the twinkle and love in her eyes above the mask she wore to protect me as she said, “Good morning, Mrs. Rose.” I returned, “Good morning, Mrs. Rose.” This momentary volley is how we’ve begun each day since we were married. We start each day with the joy of sharing our lives and our names.
I was being brave. I hoped that that tiny slice of normalcy would release the darkness swallowing me. It did not. Jackie quickly scrambled out of her protective gown over her nightshirt and into street clothes to head out of the airlocked room, down the long hall, past the elevators to the public restroom. “Be right back.”
“I’ll be here.”
We didn’t talk much when she returned. Jackie is not a morning person; she needs time to have her coffee and settle into the day before engaging. The hospital coffee was horrible, so she sipped a room-temperature bottle of Frappuccino and nibbled on a piece of coffee cake that passed as her breakfast. Eating only mattered for me insomuch as doing so would prevent my digestive tract from shutting down completely. All the nutrition I needed, the precise nutrition I needed based on the daily blood tests, was delivered straight into my bloodstream from the largest of the bags that hung on the tree. I ordered a bagel and some cream cheese from the hospital kitchen in case I could find a way to get the food down later. I never did.
Jackie remained with me as she did each morning until well after the shift change so she could meet the day nurse and feel assured that I was in good and capable hands while she returned to our temporary residence near the cancer center to shower, eat, and have a few moments to herself. “I’m going to head out now for a bit. Are you doing ok? Do you need anything from the apartment?”
“A long-sleeved nightshirt would be nice. My arms are cold.”
“You got it!”
I saw tears well in her eyes and asked, “Why the tears?”
“I just love you so much, and I can see how you are suffering. I know you have chosen to do this so we can have many more wonderful years together. I am so grateful and so in love with you. I’ll be back really soon.”
As Jackie rushed out the door, I suspected to be out of sight before her tears turned to sobs, I wanted to call out, to ask her to stay with me, but I held my tongue and soldiered on. In small measure, it was gratifying to have the mental strength to take care of her by letting her go with a smile on my face, though inside, I was terrified.
Soon after Jackie was gone, our son Jonathan arrived to take up the post to sit with me for the day, being an ever-watchful and loving presence in the room. Or was it our wonderful new daughter-in-law, Rachel, who came that day? I was too sick and locked inside myself to communicate much or even recall who was there. This was a day of pure survival, hanging on, marking time.
When the sun started its retreat, my day companion left to join Jackie for dinner before she returned to me for the night. I was alone, and the darkness I’d been struggling with all day pressed harder. What was this feeling? Where did it come from? I’d not felt anything like this since my diagnosis – not even through the debilitating initial treatments, not when the chemo drugs lobbed an embolism at my lungs, not when I lay in the ICU for days with septic shock. From the first moment I heard my diagnosis barely a year before, I’d never felt this way. My focus was always on getting into action and ultimately taking charge of the cancer. Everything I did was illuminating, far from dark. I was on a mission, and I was upbeat and determined. I set about to gather all the reliable information I could, and I considered options and possibilities. I learned that, though “incurable,” my cancer could be wrangled into a state of being a chronic illness, not a death sentence. I became determined to get the most prolonged remission possible with a good quality of life. Why could I not shake this horrible feeling?
My day nurse, Ashleigh, tapped gently on the door and entered the room carrying the usual armful of fresh IV bags and packets of pills.
“Hello, Mary. I’ve got your meds here. We are adding more potassium and magnesium, but let’s start with your vitals, shall we?”
I raised my arm for the blood pressure cuff and then held the thermometer in my mouth. No fever. Blood pressure was still too low; “soft,” she called it.
“Looks like you are going to get free refills on your hydration. We need to get that pressure to come up.”
Once I’d taken the oral medications, Ashleigh set about changing out bags on the pole, but she suddenly paused a moment as if something caught her attention. She turned to face me squarely, and with a quizzical look, clearly scanning the whole of me, she said, “Are you doing ok?”
In my mind, I was saying, “No. No, I am not, but I don’t know how to tell you what is wrong.” When I opened my mouth to speak, the only words that came out were, “I’m scared.”
Ashleigh carefully placed the bags on the counter and moved to where I was facing. With a gentle gesture, she pulled off her gloves and tenderly grasped both of my hands in her own. My eyelids fluttered closed briefly, and I felt a twinge of shame for the weakness of my words. Moments later, gathering the courage to meet her gaze, I found Ashleigh's eyes locking onto mine in a profound, almost tangible connection.
“Oh, Mary. You should be scared. This treatment is severe and dangerous and very scary. Few people can tolerate the magnitude of what you're enduring. It is so right for you to be scared.”
As tears breached the edges of my eyes, she pressed on gently, “Here’s what I want you to know: We’ve. Got. You. We are on or ahead of every change in your body, proactive in every step. We will get you well and back to the amazing life I know you have. You are safe.”
More than her words, Ashleigh’s energy and certainty settled upon me. I sensed a faint glow of light hovering for a moment over the top of my head, and then it slowly, gently seeped into my brain and traveled at a deliberate pace down throughout my entire body. The darkness gave way, and I felt peace.
© Mary Rose 2024