When I left, I was carried out strapped down to a mesh blanket, in and out of consciousness, lifted from the floor beside the bed with blue bellies surrounding me, through the doorway, under the foyer chandelier, onto the arched porch held up by magnificent columns, the sky moving further away as we descended the steep steps, onto the waiting gurney, ambulance doors slamming at my feet, I could barely breathe the words, “Jackie. Jackie.” She was right there over my shoulder. Her soft, unmistakable hand found mine, and she held on, providing an anchor as I succumbed to the gentle tug of oblivion. A serene tranquility settled over me. I was vaguely aware of the events unfolding around me but chose not to dwell on them. Feeling Jackie’s tender caress upon my hand reassured me that I would be okay.
It's more than just a saying that care partners often have a more difficult time. I wasn't in pain nor conscious enough of the events to feel fear. The sense of helplessness that Jackie must have endured as I drifted in and out of consciousness in our rural home, waiting for help to arrive, is unfathomable to me.
Arrival at the hospital jarred me back into the world. The pace was frantic, the noises loud, the environment alien. There was pressure and the sting of needles first in one arm, then the other, followed by a plastic mask on my face with tight straps at my cheeks.
Murmuring "Jackie. Jackie," I felt her reassuring squeeze. Life was coming into focus, a welcome change as I emerged from the foggy depths where I had been suspended. Words returned to me, forming coherent thoughts. Surely, we’ll be able to head home soon. Diana will pick us up. We’ll have a glass of iced tea and talk about this remarkable escapade.
I heard a voice say, “We have a room for you in ICU and will be moving you there shortly.”
My confused reply was, “Wait. What? Me? I’m going to the ICU? Why?”
That day stretched on, the longest of my life, where time lost all meaning. I was surprised when my daughter Ina materialized beside me despite living a thousand miles away. Jackie was also steadfast in her presence. Throughout the hours, marked neither by the clock nor the sun, one of them was always there keeping a constant, comforting vigil by my side and being strong advocates for my care.
I had just completed my third cycle of induction treatment, my body had suffered a myriad of cancer drugs—63 little immunotherapy bombs, nine dances with high-dose steroids, as well as nine infusions of proteasome inhibitors, which were like spraying poison into the crowd to disperse the cancer cells living in my bones.
During my treatment in the emergency department and intensive care unit, it became alarmingly clear that my current intensive cancer therapy was not being considered. Despite repeated requests from both Jackie and me, the attending hospitalists at this community hospital declined to consult with my care team at the National Cancer Institute where I was being treated, nor did they even call upon a local oncologist to have eyes on me.
I have blood cancer. I was beyond worried; I was scared.
My extensive research from trustworthy sources had already informed me of the profound impact myeloma treatments have on blood composition, and I was acutely aware that septic shock targets the bloodstream—a particularly perilous situation given that infection is the leading cause of death in myeloma patients. I feared that the hospitalists, who were not oncologists, much less specialists in myeloma, were preoccupied with less relevant metrics and making life-and-death trade-offs that I and my family would have to shoulder. My concerns were intensified by the involvement of a doctor I never met who watched my vitals and test results somewhere far away, presumably in a dark room on a computer screen, likely aided by artificial intelligence, where he wrote orders and changed medications with unsettling frequency.
The frequent paging of “Code Gray” across the hospital's PA system did little to ease my worries. The announcements happened several times every day, calling out different room numbers spanning the hospital’s many floors with nearly 400 beds. Each broadcast summoned staff trained to de-escalate situations involving aggressive individuals—not, as one might guess, to assist the elderly. I wondered how come there were so many instances of people becoming desperately agitated throughout this community hospital in a sleepy little county that straddles urban and rural life.
I have had more medical traumas in my life than anyone should. Trust doesn't come easily to me anymore, especially in the vulnerability of care. Doubt shadowed my thoughts—was I receiving the attention I truly needed? Meanwhile, Jackie and Ina were ever watchful, advocating fiercely on my behalf. And I? I lay mostly motionless, a stream of heavy, ponderous thoughts weaving through the silence in my mind.
I was suspended in an odd form of frailty, cradled within an unseen hammock woven from the love of my family and the collective affection of friends spanning the globe. With each passing day, my condition stabilized, yet there remained a sense of slipping within my soul. I found myself contemplating the delicate thread of existence I grasped onto, pondering the tranquility that might come from releasing my hold and simply drifting away. The mere idea of such surrender, even brushing against it in my mind, was like lightning striking dry tinder, sparking a fire of smoldering grit.
Visions of loved ones crept across my closed eyelids, their images drifting through my consciousness like fog pushing across still waters on an early summer morning. I had to hold fast, if not for myself, then for the sake of the beloveds for whom my resignation would be an unfulfilled vow, a needless capitulation. It would cause pain to those who mattered immensely to me should I choose to release my grip on life.
I thought of Jackie, who lay resting uneasily on the miserably uncomfortable cot adjacent to my hospital bed in the too-small room where the institutional signals made it abundantly clear that her overnight presence was not welcome. My trauma background gave us rare leverage with a simple but potent declaration: “The patient has PTSD, and she requires her support person.” This statement was our defense against resistance from hospital staff. Jackie’s presence was non-negotiable, her dedication unwavering as she threaded her arm past the tangle of IV lines, reaching from the medusa of tubes sprouting from my neck to hold my hand. A pang of sorrow touched me as I considered the depth of her despair should I decide to let go of life's tether.
Next, my thoughts moved to my cherished daughter, who brought her wedding day forward by eight months, orchestrating a simple yet profound ceremony in our backyard the day before my induction treatment began. She wanted her mother with her to share in her joy as she married her beloved life partner. Now, she lay in our guest room, having dropped everything, catching the first plane to Seattle after hearing of my condition to be by my side on the ”day shift” while I was in the hospital. She repeatedly reminded me that she was also there to make sure both Jackie and I got settled safely at home once I was stable. I pondered the shadow that would be cast over her newlywed bliss—how the joyous beginning she so richly deserved could be darkened by sorrow if I were to let go of life's fragile thread.
Those hours I spent wrestling with a force that beckoned me toward an easy way out seemed like a spiritual rite of passage—a Dark Night of the Soul. I faced it head-on. As the night unfolded, I came to look upon what I was experiencing as expectable illness exhaustion—a state of weariness that took over me both physically and mentally—driven by the weighty toll of my condition.
Throughout my life, I’ve endured many arduous battles and hardships, each victory fortifying my resilience and nurturing a capacity to thrive and grow. This time would be no different. By morning light, my smoldering grit had become a fierce blaze of determination to cling staunchly to life.Years before, I learned a simple truth: If you want to get out of a hospital, get well. It was the only way I was going to regain my agency. I summoned all the strength that was returning to my body and focused on getting well enough to be released from this tired, understaffed, well-meaning local hospital and return to the expertise of my cancer care team.
My resilience was tested time and again. Dark thoughts lingered and bumped against my heart. each time they surfaced, I’d climb on top of the thoughts and do something more to get well: walk 125 feet with the walker, make it in and out of the restroom on my own, eat, drink lots of fluids.
It worked.
The day I was released from the hospital, nine days after I had entered there only hours from death, someone very dear to me visited. She wore a bracelet that she slipped from her wrist and placed in my hand, a gesture as delicate as the situation was profound. The bracelet had an enameled charm disc that read: Inhale. Exhale. Repeat. She received this bracelet a few years before during the time of the illness that took her husband. The touch of her hand as she transferred the bracelet to me and the loving kindness imbued within it is etched in my memory.
Heading home, as we moved along the two-lane road, I thought again about how grateful I am that we decided to retire to this semi-rural paradise in the Pacific Northwest. Pastures. Farm stands. Soaring cedars. Dilapidated barns, and homes both humble and magnificent. Our driveway is long, and when we turned, and I saw the house ahead, something stirred in me. We passed the meadow where there was a doe with a new fawn nursing at her side. When we swung around to make the turn to the garage, that’s when I saw it. A giant poster was attached to the immense front door through which I’d last been carried. “Welcome Home, Mary. You Are Loved!” As we got closer, I saw that the poster had a dozen signatures or more from our wonderful neighbors. I could hardly take it in. Those signatures made with so many different pens followed me inside like a colorful fluttering of butterflies.
With caution and help, I made it up the steps into the house and reached the waiting walker. My legs felt unstable, and my arms vibrated a little on the handles as I inched my way across the room and carefully lowered myself to the couch. Breath caught in my throat as the butterflies of love continued to fly about my head, as I saw my cherished wife, my precious daughter, the photos and paintings, the rug we bought in Turkey from a school that teaches young women how to make a living for themselves, the piano where Richard played music for me, the books that were primarily gifts or written by friends, the kitchen where I’ve baked bread by the bushel basket for the food bank, the Puget Sound stretching out from our high bank, and the sky streaked with graceful white clouds. Only then did I realize I’d been squashing the fear that I would never be in this place again, and I sobbed.
oh my ... such scary times you've all experienced; yet this is written with great respect and insight to fragility and strength. I'll be thinking of you as you settle into your new environment in Seattle. Goddess-speed to remission
Dear Mary-Your writing as always is not only inspiring but describes so well the challenges you and Jackie and Ina are facing. Written with an underscore of gratitude it seems. Thank you for letting us in…cancer is a family affair and you are blessed by a beautiful wife and daughter and son-in-law plus Jackie’s kids. You are in our prayers, daily…REMISSION IS THE MISSION❤️❤️❤️ we love you. MK for Kenn too.