“Character, like a photograph, develops in darkness.” Yousuf Karsh
Day 5 and still no diagnosis…
I lay in the dark, silent tears rolling down my face. They follow the path of previous tears and I don’t bother to wipe them away; choosing instead to focus on how they tickle my skin and puddle at the base of my neck.
Yesterday had been my hardest day. It started with a wave of dizziness, followed by pain in my chest, as the room swirled and I struggled to get my breath. A rush of doctors and nurses surrounded me, as my parents stood quietly to one side. A respiratory therapist tried to give me a mask but my hand shook and I couldn’t find my face. Later, I heard my mom talking with the hospitalist quietly outside the cracked door.
“I’m sorry. She’s very, very sick,” was the only response I heard.
Now, in the quiet of the night, I cried… not for myself, but for my daughter and parents. I knew what it meant to lose a mother, and I knew what it meant to lose a child. I didn’t want to be the cause of such pain; it wasn’t supposed to be like this. Even though my daughter was grown, she still needed her mother and I needed to be there for her through the milestones of life that lay ahead. I thought of my step-mom who had cared for me since shortly after my own mom died. She was every bit my second mother, and often told me she loved me as her own. She and my dad had already been through so much this year, and now they might suffer the grief of losing a child. After the death of my own son eleven years earlier I knew all too well what I would be doing to them.
The blue of the night was replaced by the warm light of dawn peeking through the crooked slats of my window. Another day, like the days before. The flow of doctors and nurses would soon begin, each entering my room with masks and kind eyes that hinted at their hidden smiles.
The infectious disease doctor was my daily alarm clock and I tried to be coherent through the fog of a few hours sleep. We talked about my travels in Africa and Asia and he explained how things, scary things, could lie dormant in my body for years. He ordered more antibiotics to be dripped slowly into my veins, and checked the thrush that was building in my throat from these same antibiotics.
Later, the gynecologist swept in. He was a robust man, and filled the small chair as he asked about my bleeding. I tried to describe the amount of flow and size of the blood clots, as though this was a normal conversation. He had scheduled a D&C and possible hysterectomy, but the oncologist put a stop to that because of my absent immune system and blood clotting issues.
Sprinkled between these visits were medications, blood draws, and the sound of my family’s cheerful voices. They told stories, struggling to fill the silent hours and lighten the heaviness that crowded the corners of my thoughts. My mom helped me to use my bedside commode, doing her best to steady me, as my heart jumped to 150+ bpm. We shared awkward laughter when she pulled up my diaper, followed by a loving moment as she patted my leg and told me it was going to be alright.
In the late afternoon, the soft spoken oncologist entered my room slowly. Each day he came I could see it pained him to tell me he didn’t have news on my biopsy yet. But today was different. Today, he had an answer. Today, he confirmed my suspicion of leukemia. For the next half an hour, he answered all of the questions I asked; questions based in fear followed by answers I didn’t hear.
The next day, we made arrangements for me to be transferred by ambulance to my city’s large university hospital for treatment. When I arrived I was told they couldn’t confirm my leukemia diagnosis because they felt the biopsy results were not conclusive and another bone marrow biopsy would be needed. We were back to square one and another 6 days of waiting for a firm diagnosis.
Day 11 and I’ve won the lottery!
Although I was at a new hospital, the following days were much like the previous week, except the supervising doctor was assisted by interns and residents who traveled in a large group of white coats and filled my room each day. They looked so young and I wondered what that said about me. At 48 I felt older than my years. I appreciated their earnest attitudes and knew they were doing their best to apply what they had worked so hard to learn in school.
Day 11 came, and a resident and intern entered my room. They once again confirmed a leukemia diagnosis. I had known this in my heart since my private ‘aha’ moment in the ER room. Being diagnosed for a second time seemed anticlimactic. What came as a shock was the kind of leukemia I had. The young doctors smiled when they told me I had acute promyelocytic leukemia (APL), and at first I thought their upbeat demeanor was a way of softening the bad news. But they seemed truly excited. I looked at them blankly.
“You don’t understand. This is a good thing! This is the most curable form of AML leukemia there is! It’s very rare and very treatable.”
In that moment, I began to sob. It was the first time since entering the hospital that I’d cried openly in front of anyone. One of the doctors handed me tissues and said he understood. Through my tears, I told them I have a daughter, and I wept some more. These were tears of joy, and I said the most heartfelt prayer I’ve ever said.
“Thank you, God!”