TITLE: Amy Sue, Where Are You?
SUBTITLE: I became known as the woman who refused to die.
WRITTEN BY: Amy Susan Crohn
Curtained off from the world by the falling snow, I stayed alone in our house while my husband and boys went ice skating. I was restricted to the couch or my bed because of pain from three knife-like incisions, medicines that made me woozy, and an unstitched hole healing in my chest. My neck hurt and I felt confused. A new and strangling pain gripped my throat and, I thought, I must call for help. After dialing, I remember only bits and pieces, bare remnants of the experience that forever changed my life.
Moving in and out of consciousness I recall fragments of movement, noise and constant strain. A nurse is screaming. “Tachy! Tachy!! Tachy!!!” ‘Why is she yelling that my clothes are tacky, unstylish? What is that beep, whistle and whoosh sound and where is it coming from? Where did my “tacky” clothes go?’
Without explanation, I leave my body and am up on the ceiling looking down at myself on the table; wondering why everyone is crying? Wondering why my husband, Will, is throwing his body on top of mine crying: “NO! NO! Amy, my soul mate.”
‘Oh God, please,’ I think. ‘I have to let him know I’m feeling fine, no pain in this place of light. I have to get back to Will because when he was just five-years- old, his mother died at age 36, the same age I am today.‘
I tried to whisper to Will: ‘I love you. It’s going to be alright. I’m not in pain anymore. Say good bye to Daniel and Brett for me.’ I could gaze down. I saw my body on the gurney, the figures of my husband and the manic attendants around me. Then it hit me – ‘Say good bye to my little boys? To my wonderful husband? NO. I would not! I don’t care if they say I am dying, – I am going to live through this!’
I was being lifted – put down on tables. Needles were inserted. Tubes pulled. There were mumbles of transfer to another hospital by helicopter and me thinking, ‘I’m not getting in any helicopter!’ Ambulance arrived instead. The orange jump-suited man loudly ordered my husband to “stay in the front passenger seat of the ambulance no matter what happens!”
Later, I awoke in the bright, trauma center intensive care unit. My eyes felt as if they were nailed shut. I moved ever so slightly and heard the clink, jingle, clank of many tubes and wires. Terrified, I listened to the whoosh, whoosh, whoosh sound, the beeps and boops. I strained to hear voices. There was a male voice next to me, at my left side. He gave me a few gentle pats on my arm. There was another female moving around and I heard her complain: “My shift is over but now I’m stuck with this crummy patient.” Heaven and hell – a dichotomy I was discovering in hospital attendants. They could be either kind or callous.
At age 36, I made medical history like my Great Uncle Burrill B. Crohn for whom Crohn’s Disease is named. My Great Uncle was famous for discovering a terrible disease and I was to become infamous because I was hit with two potentially fatal sicknesses in a massive attack that should have killed me. My doubly dangerous condition was rare; Lupus and lymphoma struck together and the doctors simply did not know what to do with me.
The Lupus diagnosis came first and, in a series of routine follow-up tests, a tumor was found growing between my heart and lung. What followed was the trial of my life; a fight that was unlike any I had ever known. The struggle began in earnest a few hours after my admission to the ICU.
Waking, I felt on fire. I heard familiar voices this time. My sister and brother. My husband. I am relieved and then horrified as I heard them discussing my condition. “She looks like the Elephant Man,” said my sister. “Why is she so swollen?” asked my brother.
I heard my husband’s voice crack as he described bits and details that I still couldn’t process. My husband, a New York City firefighter, was accustomed to catastrophe but he couldn’t keep control as he described my condition. “It’s called angio-edema and she needed an emergency tracheotomy,” he said. “Her immune system is reacting against the growing cancer.” I gestured and they responded, saying my name, laying hands on me wherever there wasn’t a tube or wire, telling me: “You will be okay.”
I didn’t believe them.
I settled back into some kind of dreamland. ‘I want my Daddy,’ I try to mouth. ‘I want my Daddy.’ From somewhere far away, I heard my Dad’s sing-song: ‘Amy Sue, where are you?’ As a young child, it’s the call I longed for when he returned home from work or a business trip. His glee in finding me was more than a game. It was my return to safety. Now, I heard the familiar rhyme and I envisioned my father and me bouncing in ocean waves where he is teaching me to swim, losing sight of him now and then. ‘Amy Sue, where are you?’
‘Here I am, Dad, in the darkroom.’ I smell the chemicals in his home photo studio and the smoke of his ever-present pipe. Then, I am in New Mexico, far from our Westchester County, New York home, with my Dad visiting with his clients on the mesas, in the schools, at their traditional adobe homes; scared to use the outhouse that is perched on the mesa’s cliff. ‘Amy Sue, where are you?’
Back in the ICU, night became day and day became night. Eyes still swollen shut, I heard strange voices telling me my actual condition; very grave, touch and go. My critical-stage lymphoma needed treatment and, with the complications of Lupus, I had to begin at once. I never welcome drugged sleep more as I try to reach out to the dissolving voice of my father saying: ‘Amy…Sue…where…are… you?’
Not often enough, my husband and various siblings appeared. Sometimes I heard their voices, other times I squinted at their faces in the harsh light and recognized their loud hellos and saw their strained smiles. Then, quiet again.
I soon feared the lovely nurses when they approached me with The Suctioning Device. Unable to naturally cough up mucus, I would literally drown if it were not removed. Suctioning was an indescribable procedure that rendered me breathless; my body in spasm, terror, and pain.
During the bright hours, my husband came often, stroking my head, touching my toes, wherever he can reach a piece of me. His look was worried and drained. He had dark gray-blue circles under his eyes. His only request: “I want to hear your voice.” But I could only speak with my eyes as the respiratory tube torn through the layers of my neck and trachea was keeping me alive – but mute.
At times, I wanted to surrender, escape the pain and take refuge in what I had almost entered – some zone of light and peace, the promised hereafter. ‘Don’t die!’ I ordered myself again and again. ‘You are needed here – Will needs you, the boys need you.’
I panicked about Brett, the three-year-old foster child I’d mothered for just over a year. Would this take him away? I scrawled a note to Will: “What about Brett? Lawyer?” He assured me he would check into it. I remained uneasy thinking about how little Brett arrived just 13 months earlier. He needed me – desperately.
I awoke once to see two doctors and a chemotherapy nurse leaning over me with an ominous looking bag of mushy, reddish-gray stuff. “Your cancer begs treatment,” a tall handsome doctor said and they squeezed this foreign matter into one of my chest tubes. I scrunched my eyes shut and conjured up The Statue.
The image of The Statue is a vision I summoned when I needed a jolt of self-awareness. The first time, I invoked The Statue was during a particularly difficult time in my life. I was 18 and I had been left on my own by both parents to fend for myself. I felt the world beneath me collapse; much like I felt now in this strange medical place. In its stead, or from its ashes, rose my imaginary alter-ego, The Statue.
I saw the image in a half-dream state. It was of a tall cement statue posed on a cement platform. Somehow, I incorporated my insecurities into The Statue. On that first day, its ragged crack straight through its center down into the foundation meant ‘take care – you’re still standing,’ it told me – but on a precarious wedge of stone. ‘Go out and conquer but head home if you see me get worse,’ my Statue revealed to me.
So I would go – to school, to work and shut my eyes and conjure The Statue over and over again. Some days, pieces of it would be on the ground. Other times, limbs would be cracked off. On other days, it would be in bits. Those days, I usually called in sick to work or missed class and stayed home caring for my wounded self, not actually understanding what the wounds were but relying on my Statue for guidance.
Now, my Statue was dust.
Soon enough, specialists removed the respirator and replaced it with a stoma. I could speak! That evening when my husband arrived and I put my finger over the hole. I was able to croak out: “Hi Will.” My husband sobbed and ran out of the room. Tears rolled out of my eyes with abandon. I crossed the first of many thresholds of hope.
Then the feeding tube was extracted from deep in my nose, throat and stomach. “Eat, eat, eat,” a male nurse ordered. “The only ones who come out of this, Amy, are the ones who eat.”
So when they bring the hard-boiled egg, Cheerios or applesauce, my husband helped me pick at them and I ate. Sitting up was no easy task as my body moved awkwardly with pain and tubes. By the time I got into a chair, I was exhausted and had to be put back into what they called a bed in ICU, a blow-up mattress that inexplicably deflated often enough that I was left lying on a cold metal slab at times with no one available to re-inflate.
‘The morgue?’ I thought in my clouded state.
The medical residents at this teaching hospital found me a curiosity and also practice fodder. I nearly fainted when one male resident is guided by the elder professor to remove my “swan,” a soft catheter with an expandable balloon tip that is used for measuring blood pressure in the pulmonary artery. One late night, I flailed with anger at a female resident who sat cross-legged on a credenza as I begged for more pain medicine only to have her tell me: “They don’t want you to get addicted.” I raged: ‘Who cares?’
Then the children arrived. Seven-year-old Daniel found my hand. He brought me a homemade get well card. He was wary and stayed by his Daddy. On the other hand, have-no-fear Brett, scrambled right up onto the bed, laid his head on my burning chest and kissed my face wherever he could find an opening. This pattern with the boys continued throughout the coming year as I spent most of my time in one hospital or another, a revolving door of long-term care based on the critical nature of my case. Daniel was there – watching, observing, fearful yet loving, bringing me numerous gifts and writing me special prayers and songs. Brett was in and around and on top of me, happy just to see me even if all he could see were my eyes.
Finally, I was moved to a regular room. Helped into a “real” bed, I was war torn and relieved. It was me, my bed, my telephone, my television, and my commode. I instantly fell into a deep sleep. The next days were a whir of scans, chemo, delirium, mouth sores, and the first bone marrow biopsy, a harrowing experience on its own.
My first brush with chemo wipeout required transfusions of both blood and platelets. There is nothing worse than hearing your oncologist say: “If this doesn’t work, there is nothing else I can do,” and praying for the miracle that someone else’s blood products will help rejuvenate your own. Later, dark red, dollar coin-sized blotches appeared on my body – round mysterious crop circles coming from within. But the new blood gushed through me, and I could begin to hope: ‘Would it allow me to live?’
Finally, the doctors told me to go home and continue until I reached a total of 18 completed treatments. It was a long year that got more difficult with each treatment. It was a year when I questioned everything and everybody; where I spent more time in the hospital than out. But it was a year that finally put me in a tentative remission.
‘Amy Sue, where are you?’ With some amazement, 14 years later, I’m right here – with a healed heart both literally and figuratively. I am the one who reminds myself to ‘always find the funny;’ the every-day humor in even the most mundane or inexplicable things – like the time I walked in late to a business meeting full of strangers after hurriedly buying a new jacket at Dress Barn. The big, plastic don’t-steal-it tag hung from the back of the black coat until a colleague alerted me. No one laughed harder than I did.
Most of all, I am probably a lot like you – despondent over the ills of the world at large and triumphant over life measured in seconds at home.
TITLE: Amy Sue, Where Are You?