Rare diseases happen. They happen to people and they leave impressions on all like a
wake against a once sturdy boat afloat in a widening uncertain passageway.
Her name was Mildred. She had short hair and wore black rimmed glasses. She was 36
years old. Thirty six was that magical age for me growing up when I “saw” my mother
for the first time. It’s that moment when a child looks up from just seeing knees
and needs and sees the faces around and it registers an indelible mark. At 36 my
mother’s face froze. She would remain forever 36 and beloved. The age would mean to
me the moment a mother became a person. She was vulnerable got irritable and moody
and hurt. Her smile meant everything would be ok and anything loss could be found.
Mildred was that age now.
Mildred was diagnosed with cervical cancer. Swiftly it was declared stage 4. She
received cisplatin as a part of her treatment and the call was made when the
platelets began to plummet. Her white blood cell count was an absolute 150.
Mildred would not see 37. She would be frozen in 36.
The slides showed the typical findings of schistocytes with their chewed up edges.
Destruction was afoot. Like the cancer in her already this new offense was rising. A
metastatic destruction of autoimmunity. Hemolytic uremic syndrome from cisplatin. I
was excited to see a case I only read about. I hated that I was excited at the
expense of a life. I hate training. I love training.
The rare presentation of cisplatin induced hemolytic uremic syndrome meant we had to
try exchanging her plasma for donated plasma. Her kidneys failed so the days would
be plasma exchange then dialysis. While we needed chemotherapy to kill cancer we
gave instead strong immunosuppressive drugs. It would be like giving a round of
beers to a bar already drunk. We waited for the storm to pass. We waited for any
signs of infection. There was the most minuscule chance of curing the HUS, the
renal failure, the cervical cancer and avoiding a life threatening infection.
She was always a pleasant visit. Never discouraged. Never afraid. She pressed on and
smelled of the baby lotion the nurses rubbed her hands with out of compassion.
She spoke softly and the light in the room had a unique glow as her husband had
brought in a small low wattage lamp. The room dared to look homely. She wore a soft
light house coat with flowers on it. It was harder to dehumanized her bunny
slippers. The plasmapheresis machine stayed in the darken corner as the lamp only
lit around her and her bed.
For five days we did our daily treatments.
On the sixth day there was nothing to report that was different. I walked into her
room and she was on the phone.
“I know honey. I want to. I’m sorry honey. Aunt Lily will. I’m sure it will look
beautiful. Yes. No. Sylvia don’t. Honey, mommy is sorry,” she said.
I waited quietly in the darken corner.
“Let’s talk about this later. I’ll call you after school,” she said. “Bye hon..”
I sensed she got hung up on.
I approached the bed and into the halo of light.
“Everything ok?” I asked.
“I have a teenager,” she smiled.
I was married but had no children. I was far away from having a teenager. Mildred
looked and smelled like a mom. She acted like a mom. I was comforted in her halo
like a child.
“Oh… That sounds horrible,” I laughed.
“She’s having a hard time with all … This,” she said gesturing to the contents of
the room. She sighed, “It’s nearly Homecoming and we were suppose to look for a
dress. She is upset I’m here. She… She needs me home.”
I sat on the edge of her bed. Back then we sat without someone scrutinizing if we
sat on the edge of a patient’s bed. We just sat if the moment called for it. Back
then we didn’t have patient satisfaction surveys that asked if a doctor “sat to
speak with me”.
I sat because I felt weak in the knees.
Homecoming had been an important time for me. It was a right of passage and my dress
was carefully picked to be worthy of “court”.
Homecoming without an actual homecoming for Mildred seemed a double stab in a young
“I’m sorry. She’s just a kid. Forgive her,” I offered.
“Oh, I know,” Mildred smiled. She began to cry. She wanted to be picking out a dress
this weekend. I wanted to tell her it would be the case but instead I had to tell
her we were planning another 5 days of treatments and hadn’t made much progress but
hadn’t lost ground. All this and the cancer still laid a sleeping growing tyrant.
Months ago I had been given the duty of caring for a beloved lady. She was the creme
de la creme of my pulmonary attending. He was a loud and generous hearted doctor who
knew each patient with delight. “Now you care for her like I would,” he instructed
me. Elizabeth was 89 years old and her story is as rich as the Charleston air. To
care for her was to brush up against a gentle soul. When she died my beloved
Elizabeth left me a beautiful rosary. Her namesake granddaughter delivered them to
me. I hesitated to take them but Elizabeth had placed and held them in my hand while
she talked pressing them into my palm. You can’t refuse a gift embossed on your
flesh. The heavy beads held still the warmth of the Elizabeths’ handlings. Though
the entire journey with them is another story for another day to weave the rosary
plays a role here. I had never had a gift from a patient before then. It felt like
taking beautiful rocks from a sanctuary. I carried the rosary in the velvet purple
pouch in my lab coat pocket. It made me feel close again to Elizabeth and to what
she did for me as a doctor. To touch them was to go home to medicine. Something
about her living to 89 and being my first heartfelt loss and something about Mildred
being 36 and surely dying made me want to connect the two.
I reached into my pocket as Mildred wiped her tears and took her free left hand. I
placed the purple pouch in her palm and folded the fingers over and held it there
like Elizabeth had.
“Mildred. Months ago I had a beautiful patient. She had a soft soul. I loved her and
cared for her. She had lived a long life and had many who cherished her. When she
passed at 89 she left me this rosary. They feel like home to me. I know you are
Baptist. Please don’t look at them like a religious gift. They are to me giving you
back a piece of home. I don’t know many things but I know how things and people
feel. I know they will ease you just to have nearby,” I sounded like an Elizabeth.
Mildred opened the pouch and pulled out the rosary. In the soft halo light the heavy
jeweled beads and silver chain was brilliant. It looked like a heirloom necklace
from an English court. I looked at it and whispered in my mind for Elizabeth to take
care of Mildred. I was leaving the rotation and I just wanted someone to stay
Mildred thanked me with her soft eyes hugging the rosary. “It’s beautiful,” she said.
“I know the days will be hard. I’m sorry. Be strong,” I replied.
Mildred’s husband each day busy at work and late coming to visit arrived early that
morning and walked in. He had come in before work at her request.
I got up to leave after sharing with him the plan. His face tired and eyes dropping
to the floor often. He smelled of motor oil and dirt. My father would crawl under
each car and change all the oil routinely, reappearing smelling of the kind of love
that does menial unsavory tasks for duty and love. I thought highly of her husband
as I did my own fathers rough hands.
I was walking out when I heard Mildred begin to tell her husband, “You need to ask
your sister Lily to take Sylvia to get a dress.” She was holding the pouch still as
Her voice trailed off as I shut the door.
Each week it seems there is a patient that infers I have an ulterior motive to hold
them hostage in the hospital. Couple that with the daily huddles to expedite
discharges one would think physicians are cruel wardens. Homecoming is what every
doctor is working for with their patients. There isn’t any other motive then getting
them home. I hope patients know this truly. We come bearing just what we know and
juggle against what we hope. We know there are all kinds of life demands waiting. We
will get you back to them.