The Sound of Silence

Continued from Previous Post… #GodLovesHerBest

 

Late Evening, Friday, September 8, 2017

While Alyssa lay sleeping in her large, dimly-lit emergency room, Andre and I worked in tandem, alternately watching over Alyssa and juggling a myriad of details. Together, we had endured a terrifying afternoon, involving a grave health crisis for Alyssa. I am certain we were both in shock. But we did not shut down. As I reflect back on that long, pivotal day, in the midst of all the uncertainty, all the alarm, and all the fear, Andre and I had worked together in unspoken unity. Words were not necessary. As Alyssa’s husband and mother, we each stepped into the roles the crisis demanded. Now, late evening, Andre, was just outside Alyssa’s room, finally able to call and speak openly with his family and closest friends. I stood near my daughter, gazing at her immobile body, while a host of conflicting emotions filled my heart and thoughts. I was relieved and grateful because Alyssa was alive. I felt somber because, even though I am not a health professional, I understood at some level, the dreadfulness of her diagnosis. We faced impossibly hard hours and days and months ahead. Yet, I felt unwavering. I would be by my daughter’s side, whatever she faced. I also felt supported, because I knew I would not walk this road alone. Andre was here with me and my husband, Richard, was on his way. Even though I was frightened, I did not feel frantic. I did not cry. I did not ask why. Those were emotions for another day.

 

A Brief Recap: Early Afternoon, Friday, September 8, 2017,

I arrived at Alyssa’s home, that Friday afternoon, traveling from Arkansas to Oklahoma. Alyssa had been dealing with a headache for several days and on Wednesday of that week, began vomiting as well. On Thursday, she did not improve and I decided to drive to Norman the next morning to help Andre with Alyssa and the boys. Within an hour of my arrival on Friday, Alyssa was unresponsive. I immediately called 911 while Andre took her pulse. It was 45. Within minutes the  medics arrived. Once Alyssa’s heart rate was stabilized with medication, she was immediately transferred to the emergency department of a local hospital. Andre joined Alyssa there while I waited anxiously at home with the boys. None of us, including the medics, knew what was wrong with Alyssa.

As soon as Andre arrived at the hospital, he sent me a text- Have I told you that I’m glad you’re here?

I understood all the meaning that short message held. For three exhausting days, Andre had been by Alyssa’s side, cleaning up after her, feeding her and comforting her, while also taking care of their two little boys, 3-year-old Dominic and 1-year-old Christian. He was grateful I had arrived in time to help with the boys. But I think it was more than that. He was also grateful to have my emotional support for whatever lay ahead. I felt the same toward him and thought for at least the 10th time that day, “Thank God for Andre.”

It was difficult to be separated from Alyssa, even though Andre was continually updating Alyssa’s father, Richard, and myself, in a group text message. An hour after the ambulance departed, Andre sent us a terrifying update. The CT scan results were in- Alyssa had a small mass on the left side of her brain.

My sister-in-law arrived to take care of the boys and I drove to the hospital. I sat with Andre in the waiting room while the radiology technician completed the MRI. The neurosurgeon joined us and confirmed our worst fears. The MRI showed Alyssa had a small brain tumor in her left frontal lobe and a significant hemorrhage. His plan was to continue the steroids to reduce the swelling in her brain. Once she was stable, he planned to operate on Tuesday. He was 99% sure the tumor was metastatic melanoma. Cancer.

 

Early Evening, Friday, September 8, 2017

Earlier that evening, Andre and I watched as the transport team rolled Alyssa’s bed out of the MRI screening room. I was taken aback to see her face so still and unresponsive. Her long, brown hair was disheveled and her body lay motionless. She appeared to be sleeping so deeply. We walked behind Alyssa as the orderlies wheeled her from the MRI corridor, into the elevator, down to the first floor and into her room in the emergency department. We traveled through what felt like a maze of hushed halls and vacated spaces. Each area we walked past was either brightly lit or purposefully darkened. These contrasts, strobe-like and jarring, were unsettling. Time seemed distorted and it felt as if our forward motion was being thwarted as we moved through air thickened by adversity. I was relieved when we finally arrived and a nurse pushed aside the light-weight curtain that served as one of the walls for Alyssa’s spacious and private emergency room. We all entered quietly through this drawn opening. The orderlies brought Alyssa’s bed to rest in the center of the room, locked the wheels in place, exited wordlessly and closed the curtain. The room suddenly fell into near darkness.

This experience felt surreal, yet I was keenly aware of my surroundings. I heard the low, rapid, schlik, schlik, schlik of the curtain running along its ceiling track, and the whisper soft sound of the fabric swishing closed behind me. I realized why the room was so dark. There was no overhead lighting. Only a computer screen and a portable patient monitor screen illuminated the large space. The curtained entrance hung at the foot-end of Alyssa’s bed. With several square feet of empty floor space surrounding her bed on every side, the bed seemed to have slipped from its moorings in the large room. Three solid walls completed the space. Upper and lower cabinets ran along the wall to my left, with a doorway at its farthest end. A nurse stood near the laminate cabinetry, seemingly positioned in place, awaiting Alyssa’s return. I walked to stand opposite her, near the head of Alyssa’s bed. In this position, I had an unobstructed view of Alyssa and the entire room, including the nurse and the portable monitor screen stationed behind the head of the bed, constantly updating Alyssa’s vital signs. As my eyes adjusted to the darkness, the indistinct colors of the room became clearer. The pale blues and whites of the walls, the bedding and the hall curtain, the muffled sounds of far away conversation, the unhurried movements of the nurses, the softly undulating lights caused by the moving curtain, together reminded me of swimming under water. The nurse spoke in gentle tones. With Alyssa’s restful pose and her stable vital signs, the mood was almost tranquil, providing a stark contrast to the maelstrom of the last few hours. Appreciative of this serene setting, I felt somewhat soothed by the lull in activity. For the first time since arriving in Oklahoma early that afternoon, I had the opportunity and the mental space to process all that had taken place in the past week. The facts swam slowly but steadily though my mind-

We now have a conclusive MRI report that the headaches and vomiting Alyssa has been experiencing for the past few days are not caused by a stomach bug, but by a brain tumor and hemorrhage. . . .This must be why Alyssa lapsed into unconsciousness this afternoon. Is this why her heart rate dropped and her blood pressure plummeted? . . .Why are they 99% sure the cancer is melanoma? . . .Andre said once she was at the hospital, she remained semi-conscious and became more and more agitated and active. They had to give her Ativan to calm her down, to stop her movements, so they could get a clearer MRI of her brain. Why was she so agitated? I’m thankful the Ativan is allowing her to rest now.

I purposefully directed my thoughts back to the room, to Alyssa, and to my present reality. I knew it would be difficult, but I must make a conscious effort not to review the past week, or look too far into the future. Not tonight. In order to be present for Alyssa, I must stay in the moment. A strong-willed yet non-confrontational person by nature, I grow internally calm and observant, and outwardly assertive and businesslike in a crisis. But this crisis was an entirely new experience for me. I prayed for strength and presence of mind. I had a single job to do. I must keep diligent watch over Alyssa. I stood, emotionally tethered to her bed, determined to be her anchor in the emerging storm. 

The sensation of water lingered. As nondescript faces with subdued voices drifted in and out of the room, their bodies brushed against the curtain’s lightweight fabric. Dancing shadows mingled with light cast watery-colored shades of blue, white and grey around the room. The walls felt as if they swirled and swayed. Alyssa’s bed seemed to float like a white life-boat in the middle of the large room. Everything swam. Everyone one moved. Except Alyssa- and the monitor screen updating her vital signs. Its green and yellow numbers shone brightly, in stark contrast to the dimly lit room. If I was Alyssa’s anchor in this current storm, that soundless monitor screen was mine. My gaze focused back and forth between it and Alyssa’s face. Like a sleeping baby, Alyssa was so silent and still, even her white coverlet was unmoving. As an infant, how many times had I checked on her during the middle of the night? Leaning over Alyssa’s crib, I would watch her small body intently for any sign of motion. Unsatisfied, my breath would catch in my chest. Placing my hand gently on her infant body, I could feel her rhythmic breathing. The relief I felt, feeling her tiny chest rise and fall under my tender touch was palpable. If it were not for that monitor screen, I would have reached for Alyssa’s wrist to feel for a pulse. Yet, thankfully, her pulse and blood pressure readings on the monitor screen remained stable. Her oxygen saturation was normal.

Medical personnel came and went, quietly doing their jobs. The nurse originally positioned to receive Alyssa, was obviously in charge. She never left Alyssa’s room. Dressed in blue scrubs, she emerged as another swimming object in my watery expanse. I intentionally remained stationed by Alyssa’s side. Though I am a space planner and designer by training, I am part of an extended medical family, full of doctors and nurses. I knew their unwritten rule- Never leave a patient unattended. In their opinion, every patient must have an advocate nearby, at all times, day or night. To the best of my ability, I intended to insure that Alyssa received the best medical care possible. And I determined to be particularly observant that night because:

1. Alyssa had been here, at this same ER, the two previous days. Someone on staff had sent her home with an incorrect diagnosis both times. Now her symptoms had escalated to where we were today.
2. She appeared to still be sedated.
3. This was my daughter.

Between phone conversations with his family and friends, Andre came into the room to check on Alyssa, his posture erect and his manner attentive. However, I knew the tumult of the day, on the heels of a difficult week, and the report of Alyssa’s alarming diagnosis, were taking their toll on him. An optimistic and confident person by nature, true to himself, his demeanor remained outwardly positive and calm. But there were indicators that he was growing weary. In conversation, Andre has a distinctive way of opening his eyelids wide and looking directly at you, giving you his undivided attention. But now, with thick black eyebrows arched, and eyelids stretched even wider, his eyes were like two polished black agates, glazed with exhaustion, barely blinking. He needed rest. He told me his parents were on their way. I was so thankful. Andre’s parents were traveling from Kansas and Richard was on his way from Arkansas- all roads leading to Oklahoma.

It truly is a miracle that I’m already here. Alyssa and Andre could be going through this alone. I never dreamed when I arrived in Norman this afternoon, that we would be standing here, beside Alyssa in the emergency room. . . .Please Lord, heal Alyssa. Please comfort Andre and help him bear this heavy load. Bring Richard, Frank and Loida safely to us. . . .But, oh, dear God, Cancer? Does it make any sense to pray for safe travels when our daughter has just been diagnosed with cancer? Will You heal her? . . . “Lean not on your own understanding”, Kimberly. Remember in the dark what you learned in the light. You are going to need your faith more than ever. 

The nurse was reviewing Alyssa’s admission information with us and inquired about seizures. Andre promptly told the nurse Alyssa had experienced at least two seizures that afternoon. This was new information and unsettling to me. Seizures? But, this was not the time for a longer explanation. I would have to ask Andre later about the seizures. As the nurse continued to review the information, I kindly, but pointedly, told her Alyssa had been at this same emergency department the two previous days with vomiting, a headache, dehydration and a history of melanoma. After receiving treatment, she had been sent home- both times. Upon reflection, perhaps I was being passive aggressive in that sweet, southern lady way. I wanted the medical staff to pay vigilant attention to my daughter tonight. I had her attention. She responded, “Oh my goodness. I triaged her last night.”

I now felt wary and cautious. I suspected this nurse was part of the medical team that had sent Alyssa home last night, without discovering the true nature of her illness, resulting in a terrifying series of events today. As a result, we could now add seizures to the list! More than ever, my motherly instincts were to be near Alyssa, not to let her out of my sight. Not until her daddy arrived. She was 30-years-old, happily married and the mother of two young boys, but in that moment, in my heart, she was our baby. I stood resolutely at the head of her bed, keeping watch over her still body.

The nurse said she had heard Alyssa’s father was on his way.

“Yes, he’s on his way from Little Rock.”

“Does she have siblings?”

“Yes.”

I paid only partial attention to the nurse now, assuming she was just making polite conversation. I didn’t want her words to intrude into my innermost thoughts. I wanted to focus all my attention on Alyssa. In her thin, light blue hospital gown, she looked so vulnerable, and yet, so peaceful. I was reminded of a porcelain doll, comfortably tucked into her cradle for the night, her pale skin awaiting an artist’s rosy hues.

. . .Oh Alyssa, I love you so much. When will you wake? How long will the Ativan keep you sedated? . . .Tumor, hemorrhage, cancer? . . .How can you look so beautiful and yet be so sick? 

I hovered protectively. I believed she would know that her mother was near. Then the nurse asked, “Does Alyssa have a best friend?” I looked up sharply. . . . Best friend? Her question caught me by surprise. By intention, my mind fought to shift gears, off of my thoughts of Alyssa and onto the nurse’s words. . . .More words. . . .More disturbing words. Are these words more than polite conversation? Is that why her words are disturbing me? Now oddly, my mind was running on two separate tracks. I was trying to process her words, best friend, but I was also trying to focus on her face through the shadows, taking in her facial appearance for the first time-

. . . Attractive. Slightly younger than me. Blue, V-neck scrubs. Wavy, should length brown hair. Is it frosted or greying? The lighting makes it hard to tell. . . . Focus Kimberly. Words. . . . Best friend? What is she trying to tell me? 

“Are you saying I should call her best friends? Tonight?” I asked.

The nurse continued to look directly at me. “I would want my best friend to know.”

. . . I would want my best friend to know? . . . Best friend?  

She was speaking my language. Faces came to my mind. Faces of my friends. My best friends. My dear, dear friends.

. . . But know what? 

I struggled to concentrate and steady myself. A rising tide of apprehension threatened my calm resolve. A contest of tug-of-war began in my brain: Denial vs. Acceptance. Some part of my brain began to understand, for the first time, what this nurse was trying to convey indirectly- Your daughter is in danger of dying, possibly tonight or tomorrow. The family and friends who love her best, need to be alerted. They need the opportunity to see her. . . .To say goodbye? . . .Is that what she is implying?

Denial won. I actually felt rather indignant and defiant. I dared not embrace her implications. Yet, I could not totally reject what she was implying. Inside my head, the game abruptly changed and a rapid game of ping-pong commenced.

Ping  . . . I doubt I can trust this nurse. She did not even recognize Alyssa from the previous night. Yet,

Pong . . . They have told us repeatedly to call in the family. For the surgery on Tuesday, right? Could Alyssa actually die before the surgery on Tuesday? Will she have the opportunity to fight this cancer?

Ping . . . But I’m looking at her vital signs on the monitor screen. She is stable now. The hemorrhage is under control with the steroids. The family will be here for the surgery on Tuesday. 

Pong . . . Is she really in danger of dying? Tonight? 

Ping . . . Wait! I bet they are they just covering their bases. They have gone from not paying close enough attention to Alyssa, to exaggerating her condition. Surely this nurse is exaggerating. But, 

Pong . . . Should I have already told Alyssa’s siblings, Carson and Hope to come? Should I have already called her high school friends? What should I do?

I asked Andre about his extended family and her local friends. Yes, he had already been in touch with his brothers and Alyssa’s best friends from college and church. His brothers would be arriving from out of town as soon as possible.

So, . . . Andre has already mobilized his family. 

I felt troubled. I must speak with Richard. My husband is consistently a calm, quiet, undramatic man. He is also an excellent physician. He would be completely honest with me about our daughter. I rechecked the monitors. Alyssa’s vital signs remained stable. I did not want the nurse to overhear our conversation, so I stepped to the edge of the curtain and opened it slightly, creating a doorway. I squinted my eyes in the glaring light. From my position in the brightly-lit hallway, I could peer into Alyssa’s darkened room. By rote, I touched my I-phone screen. . . . Phone. . . . Favorites. . . . ICE- In Case of Emergency- Dr. Richard Harper. . . . Yes, this is an emergency. I tried to read Alyssa’s monitor screen as it glowed in the distance, but could not determine the numbers. My thoughts competed as I looked at the phone screen. . . . Best friends? . . . Call in the family? The phone was not dialing. . . . Don’t fail me now! I pleaded silently with my phone, as if it were alive. Then I saw the familiar name and the word- dialing, scroll across the screen. Placing the phone to my ear I felt slightly chastened, because I am often cynical about the amount of time people spend on their cell phones. However, now, I was immensely thankful for this device that kept me connected to my outside word. I had already been in touch with many of my friends and family. But, now I experienced a wave of panic. Earlier in the evening, I had called Carson and Hope. I conveyed to them that Alyssa’s condition was serious, but I had not told them she could possibly die. The fact that the brain hemorrhage was life threatening had not entered my mind. Perhaps my overwhelmed psyche was protecting my emotions and I in turn was protecting Carson and Hope’s emotions.

Richard answered immediately and replied in a serious tone, “Honey, I hate to tell you, but it does not get any more serious than this.”

I did not ask him to elaborate. I had my answer. The nurse had not been exaggerating. Alyssa remained in critical condition. Peering into Alyssa’s room, I sensed that her body, a formless shape in the middle of that darkened space, was adrift on a vast sea of uncertainty. Even though it seemed my brain could only process small amounts of terrifying information at a time; I knew what I must do next. I quickly made the two hardest phone calls of the day. One to Carson, and one to Hope. I could see them in my mind’s eye, as they sat in their living rooms with their spouses nearby. I struggled with what and how much to say. I tried to keep the tone of my voice calm, yet still communicate a clear message, “Come. Leave in the morning. As soon as you can come safely, come.”

Now my heart raced in different directions- to Carson and Ariel in Arkansas, to Hope and Matt in Texas and to Richard, traveling west on I-40. I purposefully slowed my breathing, reminding my body to relax. I prayed that God would comfort the misery of my heart, as I agonized, knowing the heartache that my loved ones were facing tonight. “Oh God, be near,” was my constant prayer. I was so thankful my children had their spouses for support. I reminded myself that Andre’s parents, Frank and Loida, were on their way to support Andre. And Richard, my Richard, my rock, would be here soon. I made a difficult, yet deliberate choice. I was confined to one place at a time. I must trust that God would be near my loved ones tonight as they grappled with this terrible news. All of these thoughts, calls and prayers took but a few minutes, but now it was late, and I didn’t want to linger long in the hallway, away from Alyssa. I would have to call her best friends from high school in the morning.

Satisfied that I had done all I could do, I reentered Alyssa’s dark and quiet room and heard the now familiar schlik, schlik, schlik, as I closed the hall curtain behind me. I took my place near her bed and refocused my attention on Alyssa. I rechecked her monitor—still stable. As my eyes adjusted to the darkness, I felt my panic subside and my composure return. I did not try to comprehend the truth of Richard’s words. Whether it be from ignorance, denial, shock or answered prayer, I did not entertain the possibility that Alyssa might die that night, or the next day, or the next. Cancer was the oversized nemesis lurking in my thoughts. IT was the cause of my pain and my fear.

My heart ached for Alyssa, my silent sleeping daughter, as she she lay motionless. How would she respond to her cancer diagnosis? What did this mean for Andre? For their boys? For all of us? How would we cope? . . . Oh Lord, please heal my daughter. There is so much uncertainty in her future. Will she be healed? I do not know, yet, I must not lose hope. This I do know- Whatever she is facing and for however long this storm may last, I will be here, by her side.

 

This post is Part 4 of the story of how our journey with cancer began.  Read the rest of the story here:

PART 1: WHAT ARE THE ODDS?
PART 2: FIRST RESPONDERS
PART 3: #GODLOVESHERBEST
PART 4: THE SOUND OF SILENCE
PART 5: KEEPING WATCH BY NIGHT
PART 6: WHEN WORDS MATTER MOST
Part 7: Don’t Worry, Daddy
Part 8: A Mother’s Prayer

 

Photograph by Richard Harper, Columbine Trail, Red River, New Mexico, 2017